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X-WR-CALDESC:Events for Hemophilia Alliance
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DTSTART;TZID=America/New_York:20240507T140000
DTEND;TZID=America/New_York:20240507T150000
DTSTAMP:20260403T185735
CREATED:20240311T173328Z
LAST-MODIFIED:20240311T173328Z
UID:46401-1715090400-1715094000@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Genentech - Reinforcing 10+ years of clinical trial experience with a subcutaneous prophylaxis treatment
DESCRIPTION:Date: Tuesday\, May 7\, 2024\nTime: 2:00pm – 3:00pm ET \n\n \nTITLE:\nReinforcing 10+ years of clinical trial experience with a subcutaneous prophylaxis treatment\, including the latest data in infants \nWEBINAR OBJECTIVE:\nDr. Mike Silvey will share his perspective on managing patients with hemophilia A using a subcutaneous prophylactic treatment. The presentation will include the pivotal efficacy and safety data that is the foundation of the ongoing clinical trial program in patients with and without FVIII inhibitors\, including an overview of real-world experience. Dr. Silvey will share updates from the latest trial in infants and previously untreated patients. The webinar will feature brain teasers\, and showcase social media that’s engaging the hemophilia community and polls. Q&A session will follow the program.  \nSPEAKER:\n\nMichael Silvey\, DO\nHTC Director – Children’s Mercy HTC\, Kansas City\, MO.\nAssociate Professor of Pediatrics – University of Missouri-Kansas City School of Medicine. \nSPEAKER’S BIO:\nMichael Silvey\, DO\, is an Associate Professor of Pediatrics at the University of Missouri-Kansas City School of Medicine and the Associate Director of the Kansas City Regional Hemophilia Treatment Center at Children’s Mercy Hospital in Kansas City\, Missouri. He received his medical degree from The Chicago College of Osteopathic Medicine. He completed his general pediatrics residency at the University of Texas Health Science Center-San Antonio and his pediatric hematology/oncology fellowship at Children’s Mercy Hospital in Kansas City\, Missouri. His primary clinical and research interests are hemophilia\, inherited platelet function disorders\, and the coagulation system in patients with congenital heart disease as well as patients need ECMO. Dr. Silvey serves as a primary investigator for several research studies involving both bleeding and clotting disorders. In addition to enjoying taking care of pediatric bleeding disorder patients\, he also likes to spend lots of time with his wife and two children and getting out on the golf course.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-genentech-reinforcing-10-years-of-clinical-trial-experience-with-a-subcutaneous-prophylaxis-treatment/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240514T140000
DTEND;TZID=America/New_York:20240514T150000
DTSTAMP:20260403T185735
CREATED:20240410T142934Z
LAST-MODIFIED:20240410T142934Z
UID:46542-1715695200-1715698800@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Presents - Hemophilia Alliance Network Services/Emerging Therapy Solutions
DESCRIPTION:Date: Tuesday\, May 14\, 2024\nTime: 2:00pm – 3:00pm ET \n\n \nTITLE:\nHemophilia Alliance Network Services/Emerging Therapy Solutions \nA Gene Therapy Payer Contract \nWEBINAR DESCRIPTION:\nThe past twelve to eighteen months have been landmark times for gene therapy treatments for individuals with bleeding disorders.  While the third party payers\, reinsurers and prescription benefit plans have begun forming strategies for benefit plan coverage\, pricing\, patient qualifications and follow up reporting. Hemophilia Alliance Network Services (HANS) has been hard at work arranging for adequate contractual arrangements with important entities influencing Payor behavior and strategies for the use of Gene Therapy.  The HANS goal was to create relationships with entities that could offer acceptable contractual terms but importantly influence the common prior authorization process to provide a clear path for delivery of the product\, provision of the service to Hemophilia Treatment Center (HTC) patients\, and subsequent confidence in the payment for this high-cost therapy.   \nHANS is pleased to announce that it has executed an Agreement with Emerging Therapy Solutions (ETS) effective January 1\, 2024.  Emerging Therapy Solutions® (ETS)\, an industry leader in providing cutting-edge services to help payers and other risk-bearing entities prepare for the accelerating growth in cell and gene therapies and other high-cost\, complex treatments. This webinar will provide a high-level overview from HANS leadership regarding the Agreement with ETS as well as how HTCs can gain access to this Agreement.  HANS will ask the leadership from ETS to describe the business model and services they provide\, the ETS customer base and provide important information on how to HTCs can intersect with ETS to obtain necessary approvals for gene therapy treatments for qualified patients.  During this one-hour webinar you will hear important details on the authorization process\, clinical review and administrative details that provide a clearer path to benefit coverage and payment for HTC patients rather than the time-consuming process of single case agreements with payors that many HTCs have experienced thus far. \nThis webinar is available to ALL Hemophilia Treatment Centers that are members of the Hemophilia Alliance\, it is NOT restricted to participating members of the Hemophilia Alliance Network Services Agreements.  If an HTC is not a HANS member today and wishes to join HANS to access the ETS agreement \, please reach out to your Member and Community Relations Team Member who will assist you.  Administrators\, Finance team members\, Pharmacists and Physicians are ideal candidates to attend this webinar.  However\, it is open to any interested employee of member HTCs. \nSPEAKERS & BIOs:\n\nRoland Lamy\, Jr. – Vice President of Payer Relations\nRoland Lamy has held a variety of leadership positions in the healthcare industry including sales management\, underwriting\, employee benefit and rate development\, hospital and physician negotiations and contracting\, and government programs oversight and business management. Click here to learn more about Roland… \n\nZack Duffy – Director of Member & Community Relations\nMost recently\, Zack Duffy was the Program Administrator for The Hemophilia Center at Oregon Health & Science University (OHSU) overseeing the administrative and business functions of the clinic and pharmacy. He started with the Factor Program at The Hemophilia Center in 2013\, when it was a 340B physician dispense model. In 2017\, he led the transition from a physician dispense to a pharmacy dispensing model. Click here to learn more about Zack…
URL:https://hemoalliance.org/alliance-events/hemophilia-alliance-presents-hemophilia-alliance-network-services-emerging-therapy-solutions/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240605T130000
DTEND;TZID=America/New_York:20240605T140000
DTSTAMP:20260403T185735
CREATED:20240513T202047Z
LAST-MODIFIED:20240513T202047Z
UID:65965-1717592400-1717596000@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Bayer - Clinical review of the Jivi® PROTECT VIII Trial and insights from HEM-POWR: A Real-World Evidence (RWE) Study of Jivi®
DESCRIPTION:Date: Wednesday\, June 5\, 2024\nTime: 1:00pm – 2:00pm ET \n\n \nTOPIC:\nClinical review of the Jivi® PROTECT VIII Trial and insights from HEM-POWR: A Real-World Evidence (RWE) Study of Jivi® \nWEBINAR OVERVIEW: \n\nThis session includes key information about Jivi including\, safety and efficacy data from the clinical trials\, step-wise dosing and Jivi RWE Data from the 4th interim analysis of HEM-POWR\, a multinational\, open-label\, prospective\, non-interventional\, multicenter cohort study of Jivi.\nThere will also be a review of the Q2 2024 340B pricing for the Bayer Hemophilia A portfolio under the Hemophilia Alliance Contract.\n\nSPEAKER:\n\nDr. Vanessa K. Salinas-Lunas\nPediatric Hematology\nCenter for Inherited Blood Disorders \nSPEAKER’S BIO:\nN/A
URL:https://hemoalliance.org/alliance-events/a-webinar-from-bayer-clinical-review-of-the-jivi-protect-viii-trial-and-insights-from-hem-powr-a-real-world-evidence-rwe-study-of-jivi/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240620T140000
DTEND;TZID=America/New_York:20240620T150000
DTSTAMP:20260403T185735
CREATED:20240609T180107Z
LAST-MODIFIED:20240609T180107Z
UID:65966-1718892000-1718895600@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts – Practice Considerations for ROCTAVIAN™ (valoctocogene roxaparvovec-rvox) from BioMarin
DESCRIPTION:Date: Thursday\, June 20\, 2024\nTime: 2:00pm – 3:00pm ET \n\n \nTitle: Practice Considerations for ROCTAVIAN™ (valoctocogene roxaparvovec-rvox)  \nObjectives:   \n\n\nReview coverage and typical prior authorization criteria for ROCTAVIAN\n\nReview considerations and pricing education available for single-case agreements\n\nHemophilia Alliance’s gene therapy support for Member Hemophilia Treatment Centers\n\nSpeakers: \n\n\nJosh Sammon\, PharmD\, Senior Director\, Market Access\, Hemophilia\n\nHemophilia Alliance Team
URL:https://hemoalliance.org/alliance-events/a-webinar-on-practice-considerations-for-roctavian-from-biomarin/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240625T130000
DTEND;TZID=America/New_York:20240625T140000
DTSTAMP:20260403T185735
CREATED:20240606T185838Z
LAST-MODIFIED:20240606T185838Z
UID:47764-1719320400-1719324000@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts – Wilate Prophylaxis in VWD – Results from the WIL-31 Study from Octapharma
DESCRIPTION:Date: Tuesday\, June 25\, 2024\nTime: 1:00pm – 2:00pm ET \n\n \nTitle: Wilate Prophylaxis in VWD – Results from the WIL-31 Study \nObjectives:\n1) Understand the bleeding symptoms experienced by folks with von Willebrand disease\n2) Understand the benefits of wilate prophylaxis in von Willebrand disease across different ages and types\n3) Understand the lack of von Willebrand factor and FVIII accumulation during wilate prophylaxis  \nSpeaker:\n\nClaudio Sandoval\nSenior Director of Scientific & Medical Affairs at Octapharma \nClaudio Sandoval is the Senior Director of Scientific & Medical Affairs at Octapharma. Before his current role he was a pediatric hematologist-oncologist for 30 years caring for children with bleeding disorders\, cancer\, sickle cell disease\, and other maladies. Claudio graduated from New York Medical College and trained at Schneider Children’s Hospital in New Hyde Park\, NY and St. Jude Children’s Research Hospital in Memphis\, TN.
URL:https://hemoalliance.org/alliance-events/wilate-prophylaxis-in-vwd-results-from-the-wil-31-study-from-octapharma/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240711T130000
DTEND;TZID=America/New_York:20240711T140000
DTSTAMP:20260403T185735
CREATED:20240617T165403Z
LAST-MODIFIED:20240916T144535Z
UID:65967-1720702800-1720706400@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Presents - Navigating Patient Assistance and Copay Assistance Schemes
DESCRIPTION:Date: Thursday\, July 11\, 2024\nTime: 1:00pm – 2:00pm ET \n\n \nTitle:\nUnderstanding the difference between Copay Accumulators\, Copay Maximizers\, and Alternative Funding Programs. \nObjectives: \n\nIn this comprehensive session\, attendees will gain a deep understanding of three critical elements of the difference between patient access barriers: copay accumulators\, copay maximizers\, and alternative funding programs. This talk will demystify these concepts\, explain how each mechanism operates\, their impact on patients’ out-of-pocket costs\, and the broader implications for patients\, providers and insurers.\nBy the end of this session\, attendees will be equipped with the knowledge and tools to better understand the nuances of copay accumulators\, copay maximizers\, and alternative funding programs. They will leave with actionable strategies to support patients in managing their out-of-pocket costs while maintaining access to essential medications.\n\nSpeakers:\n\nBecky Burns\nCOO & CFO of the Bleeding and Clotting Disorders Institute\, Peoria\, IL. Click here to learn more about Becky. \n\nKollet Koulianos\nHemophilia Alliance Payer Relations Consultant. Click here to learn more about Kollet.
URL:https://hemoalliance.org/alliance-events/navigating-patient-assistance-and-copay-assistance-schemes/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240716T140000
DTEND;TZID=America/New_York:20240716T150000
DTSTAMP:20260403T185735
CREATED:20240629T004512Z
LAST-MODIFIED:20240629T004512Z
UID:65970-1721138400-1721142000@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts – An interactive discussion on VWD case-based experience from Takeda
DESCRIPTION:Date: Tuesday\, July 16\, 2024\nTime: 2:00pm – 3:00pm ET \n\n \nDiscussion Topic: VWD Case-Based Experience \nDescription:\nJoin our expert\, Dr. Maissaa Janbain\, MD\, for an interactive discussion about managing patients who are living with VWD. Dr. Janbain will guide you through a VWD case-based experience\, including reviewing treatment history and discussing how VONVENDI [von Willebrand Factor (Recombinant)] may be used for on-demand treatment of gastrointestinal (GI) bleeding. \nSpeaker:\n\nMaissaa Janbain\, MD \nMaissaa Janbain\, MD is Currently an Associate Professor of Clinical Medicine at Tulane University; and serves as the Director of the Louisiana Center for bleeding and clotting disorders. Dr. Janbain has received multiple awards and grants (including National Hemophilia Foundation Fellowship Award 2014\, Louisiana Clinical and Translational Research Roadmap Scholarship 2015\, HTRS Mentored Research Award 2017 and School of Medicine Scientist Pipeline Program 2017) that allow her to focus her research and time on taking care of patients with benign hematologic disorders\, with an emphasis on bleeding disorders such as hemophilia and von Willebrand disease but also thrombosis and platelet disorders. She has presented at several national and international meetings and her research work has been published in several journals. Dr. Janbain is a founding member of the VENUS (venous thromboembolic network of the US) network and a member of the steering committee of ADVANCE US\, co- chairing the project sub-committee.
URL:https://hemoalliance.org/alliance-events/an-interactive-discussion-on-vwd-case-based-experience-from-takeda/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240821T130000
DTEND;TZID=America/New_York:20240821T140000
DTSTAMP:20260403T185735
CREATED:20240807T200904Z
LAST-MODIFIED:20240816T140453Z
UID:67941-1724245200-1724248800@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Presents - Genetic Testing Program
DESCRIPTION:Date: Wednesday\, August 21\, 2024\nTime: 1:00pm – 2:00pm ET \n \n \n  \nTitle:\nHemophilia Alliance Genetic Testing Program \nHemophilia Alliance has introduced a new Genetic Testing Program as of August 1\, 2024. This initiative offers genetic testing for individuals with Hemophilia A\, Hemophilia B\, and von Willebrand’s disease. The program is specifically designed for patients receiving care at Hemophilia Alliance Member Treatment Centers who either lack insurance coverage\, are ineligible for other free genetic testing programs or studies\, or face prohibitive out-of-pocket costs. The testing will be conducted by Bloodworks in Washington state and Versiti in Wisconsin. \nWho will be eligible for free testing? \n\nPatients receiving care at a Hemophilia Alliance Member HTC who are not eligible for other available genetic testing free programs or studies AND meet one or more of the following criteria:\n\nPatient does not have insurance coverage.\nPatient does not have coverage for genetic testing under their insurance plan\, i.e. not a covered benefit.\nPatients who cannot afford the out-of-pocket expenses associated with the testing and are at\, or below\, 400% of the Federal Poverty Level.\n\n\n\nAdditional information on the program and how to get started can be found here.
URL:https://hemoalliance.org/alliance-events/hemophilia-alliance-genetic-testing-program/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241017T120000
DTEND;TZID=America/New_York:20241017T130000
DTSTAMP:20260403T185735
CREATED:20240903T193616Z
LAST-MODIFIED:20240916T145026Z
UID:68579-1729166400-1729170000@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - Shining a Spotlight: The Journey to Optimize Care in Women and Girls with Hemophilia A
DESCRIPTION:Date: Thursday\, October 17\, 2024\nTime: 12:00pm – 1:00pm ET \n\n \nTopic: \nShining a Spotlight: The Journey to Optimize Care in Women and Girls with Hemophilia A \nObjectives: \n\nShine a light on the topic of women & girls with Hemophilia A\nDiscuss the complexities in the diagnosis of women & girls with Hemophilia A\nReview real-world experiences of women & girls with Hemophilia A\n\n  \nSpeaker: \nAngela Weyand\, MD Co-director\, Hemophilia Treatment Center\, Clinical Associate Professor of Pediatrics\, University of Michigan C.S. Mott Children’s Hospital \n \nDr. Weyand is pediatric hematologist/oncologist from University of Michigan C.S. Mott Children’s Hospital where she is a clinical associate professor. She received her medical degree from U of Michigan and did her residency in Seattle Children’s Hospital\, her fellowship at U of Michigan and her post doc in Hemophilia and Bleeding Disorders with the National Hemophilia Foundation Fellowship Program. \nShe has a particular interest in adolescent girls with bleeding and clotting disorders and issues impacting their care including quality of life.
URL:https://hemoalliance.org/alliance-events/shining-a-spotlight-the-journey-to-optimize-care-in-women-and-girls-with-hemophilia-a/
CATEGORIES:Members Only,Webinar
ATTACH;FMTTYPE=image/png:https://hemoalliance.org/wp-content/uploads/2023/06/Sanofi-New-Logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241030T130000
DTEND;TZID=America/New_York:20241030T140000
DTSTAMP:20260403T185735
CREATED:20241014T140040Z
LAST-MODIFIED:20241021T131441Z
UID:68994-1730293200-1730296800@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Presents - Navigating The Enhanced Requirements Of DSCSA As A 340B Covered Entity
DESCRIPTION:Date: Wednesday\, October 30\, 2024\nTime: 1:00pm – 2:00pm ET \n \nTitle: \nNavigating The Enhanced Requirements Of DSCSA As A 340B Covered Entity \nObjectives: \n\nReview a brief history of the Drug Supply Chain Security Act and the new enhanced requirements.\nUnderstand where covered entities and their affiliated contract pharmacies fit into the supply chain.\nDiscuss the applicable requirements and potential pathways to compliance.\n\n  \nSpeaker: \nMichael Fusaro\, PharmD \nHead of Regulatory Compliance & Senior Pharmacist\, The Alliance Pharmacy \n \nMichael has over 10 years of experience as a pharmacist working with the bleeding disorder community and as the son of a hemophiliac\, a lifetime of personal experience. He graduated St. John’s University with his PharmD. in 2008. \nAs the Director of Regulatory Compliance & Senior Pharmacist of The Alliance Pharmacy (TAP)\, Michael oversees the revision and implementation of policies and procedures to ensure compliance with local\, state\, and federal laws as well as meeting the standards of our numerous accreditations. Michael maintains active pharmacist licenses in 12 states including New York where he resides.
URL:https://hemoalliance.org/alliance-events/navigating-the-enhanced-requirements-of-dscsa-as-a-340b-covered-entity/
CATEGORIES:Members Only,Webinar
ATTACH;FMTTYPE=image/jpeg:https://hemoalliance.org/wp-content/uploads/2024/10/Mike-Fusaro-bio.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241106T140000
DTEND;TZID=America/New_York:20241106T150000
DTSTAMP:20260403T185735
CREATED:20241010T193249Z
LAST-MODIFIED:20241016T175406Z
UID:68958-1730901600-1730905200@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - Explore KOVALTRY® With Confidence by Bayer
DESCRIPTION:Date: Wednesday\, November 6\, 2024\nTime: 2:00pm – 3:00pm ET (Updated Starting Time) \n\n \nTopic: \nExplore KOVALTRY® With Confidence \nOverview: \nClinical Trial Results\, Dosing and Pharmacokinetics of KOVALTRY® in adults\, adolescents and children \nSpeaker: \nMaissaa Janbain\, M.D.\, MSCR \nAssociate Director\, Louisiana Center for Bleeding and Clotting Disorders \nAssociate Professor of Medicine\, Tulane University New Orleans\, LA \n \nMaissaa Janbain\, MD.\, MSCR is Currently an Associate Professor of Clinical Medicine at Tulane University; and serves as the Director of the Louisiana Center for bleeding and clotting disorders. Dr. Janbain has received multiple awards and grants (including National Hemophilia Foundation Fellowship Award 2014\, Louisiana Clinical and Translational Research Roadmap Scholarship 2015\, HTRS Mentored Research Award 2017 and School of Medicine Scientist Pipeline Program 2017) that allow her to focus her research and time on taking care of patients with benign hematologic disorders\, with an emphasis on bleeding disorders such as hemophilia and von Willebrand disease but also thrombosis and platelet disorders. She has presented at several national and international meetings and her research work has been published in several journals. Dr. Janbain is a founding member of the VENUS (venous thromboembolic network of the US) network and a member of the steering committee of ADVANCE US\, co- chairing the project sub-committee.
URL:https://hemoalliance.org/alliance-events/membexplore-kovaltry-with-confidence-by-bayer/
CATEGORIES:Members Only,Webinar
ATTACH;FMTTYPE=image/jpeg:https://hemoalliance.org/wp-content/uploads/2023/12/Bayer.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241121T140000
DTEND;TZID=America/New_York:20241121T150000
DTSTAMP:20260403T185735
CREATED:20241022T140623Z
LAST-MODIFIED:20241022T140756Z
UID:69115-1732197600-1732201200@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar On Health Equity From Takeda
DESCRIPTION:Date: Thursday\, November 21\, 2024\nTime: 2:00pm – 3:00pm ET \n \nTitle: \nHealth Equity \nDescription: \nPlease join Takeda for a webinar on Health Equity and how Takeda is making progress towards its goal of improving equitable access to treatment and care for all. Anthea will share Takeda’s broad strategy\, how it relates to bleeding disorders\, and offer opportunities for action to advance health equity goals. \nSpeaker: \nAnthea Cherednichenko\, VP US Hematology Franchise Head  \n \nAnthea leads the sales and marketing teams for Takeda’s Hematology portfolio. Anthea’s values aim to inspire positive patient outcomes through inclusive purpose-driven teams that drive innovation. Anthea previously served as the General Manager for Takeda Austria. Prior to that role\, she was in Global and European leadership roles in Hematology based out of Switzerland. Originally from Australia\, Anthea spent her early career years in medical device and health IT marketing roles in both Australia and Asia\, before joining Baxter (later acquired by Takeda) in 2013. Anthea holds a Master of Public Health from the University of Sidney and Master of Business Administration from Victoria University.
URL:https://hemoalliance.org/alliance-events/a-webinar-on-health-equity-from-takeda/
CATEGORIES:Members Only,Webinar
ATTACH;FMTTYPE=image/png:https://hemoalliance.org/wp-content/uploads/2023/06/Takeda-logo-new.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241204T120000
DTEND;TZID=America/New_York:20241204T130000
DTSTAMP:20260403T185735
CREATED:20241101T160243Z
LAST-MODIFIED:20241101T163332Z
UID:69334-1733313600-1733317200@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Sanofi On Real World Surgical Experiences with Altuviiio
DESCRIPTION:Date: Wednesday\, December 4\, 2024\nTime: 12:00pm – 1:00pm ET \n \n  \n  \n  \n \nTopic: \nReal World Surgical Experiences with Altuviiio \nDescription: \nThis program will focus on sharing real-world experiences with Altuviiio\, especially within a surgical context. We’ll kick things off with an introduction to Altuviiio\, followed by some in-depth discussions on surgical experiences. We’ll wrap up with a summary and a Q&A segment\, which I’m sure will spark some great conversations! \nSpeaker: \nShveta Gupta\, MD \n \nShveta Gupta\, MD\, is a Pediatric Hematologist Oncologist and Medical Co-Director at Alliance OBGYN. Dr. Gupta also serves a the Medical Director for IQVIA. \nDr. Gupta received her medical degree with honors and distinction from All India Institute of Medical Sciences in New Delhi\, India. She completed both an internship and residency in pediatrics at Children’s Hospital Los Angeles\, where she also completed a fellowship in hematology oncology. Her primary clinical interests include sickle cell disease as well as bleeding and clotting disorders\, including hemophilia and von Willebrand disease. In addition\, she pursued further training in transfusion medicine and coagulation disorders at Baylor College of Medicine in Houston where she acquired additional expertise in urgent hemotherapy and coagulation consultation in critically ill pediatric patients. \nIn 2016-2017\, Dr. Gupta served as chair of the Hemostasis and Thrombosis Research Society Fellows Network. She is a member of the American Society of Hematology\, the Hemostasis and Thrombosis Research Society\, and the American Association of Blood Banks.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-sanofi-on-real-world-surgical-experiences-with-altuviiio/
CATEGORIES:Members Only,Webinar
ATTACH;FMTTYPE=image/png:https://hemoalliance.org/wp-content/uploads/2023/06/Sanofi-New-Logo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20241218T130000
DTEND;TZID=America/New_York:20241218T140000
DTSTAMP:20260403T185735
CREATED:20241101T163407Z
LAST-MODIFIED:20241101T163925Z
UID:69340-1734526800-1734530400@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from Novo Nordisk - Unmet Needs in Current Hemophilia Care: From Burdens to Breakthroughs
DESCRIPTION:Date: Wednesday\, December 18\, 2024\nTime: 1:00pm – 2:00pm ET \n \n  \n  \n  \n  \n \nTitle: \nUnmet Needs in Current Hemophilia Care: From Burdens to Breakthroughs \nDescription and Session Objectives: \nTo provide a clinical overview of the cost and treatment burden across all hemophilia types\, the experience with current therapy\, and unmet needs that may be addressed with novel therapies. \nTarget Audience: \nAll HTC Staff \nSpeakers: \nParin Chikani PharmD\, MBA \nRyan Rodriguez PharmD\, MS\, BCPS \n \nParin Chikani\, lives in the Chicagoland area and earned his Doctorate of Pharmacy degree from the University of Illinois at Chicago\, College of Pharmacy and his MBA from Kellstadt Graduate School of Business. Before joining Novo Nordisk\, Parin had been in the Pharmacy/Managed Care setting for over 15 years where he held many different roles and leadership positions within Pharmacy and Medical areas of the business. At Novo Nordisk\, one of his roles and responsibilities is to ensure payors and clinicians are up-to-date on evidence based clinical and scientific information in the areas of Rare Diseases to help assist them with patient care. \n \nRyan Rodriguez is a Medical Liaison for rare blood disorders at Novo Nordisk covering the Midwest. His responsibilities include learning from and sharing medical information with clinicians who treat patients with hemophilia and other bleeding disorders\, aligning with his passion for evidence-based patient care. Prior to joining Novo Nordisk\, Ryan earned his PharmD degree from the University of Florida\, and then served as Clinical Associate Professor at the University of Illinois Chicago College of Pharmacy\, where he also earned his Master’s degree in epidemiology. Throughout his career\, Ryan has been involved in medical communications\, evidence generation and publication\, and formulary management for various public and private entities.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-novo-nordisk-unmet-needs-in-current-hemophilia-care-from-burdens-to-breakthroughs/
CATEGORIES:Members Only,Webinar
ATTACH;FMTTYPE=image/png:https://hemoalliance.org/wp-content/uploads/2023/09/Standard-Manufacturing-Partners-Novo_width_191px.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250219T130000
DTEND;TZID=America/New_York:20250219T140000
DTSTAMP:20260403T185735
CREATED:20250204T192346Z
LAST-MODIFIED:20250204T192346Z
UID:70040-1739970000-1739973600@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from BioMarin on ROCTAVIAN: Improving Patient Outcomes - Latest Data & Support Initiatives
DESCRIPTION:Date: Wednesday\, February 19\, 2025\nTime: 1:00pm – 2:00pm ET \n  \n \n  \n  \n \nTITLE: \nROCTAVIAN: Improving Patient Outcomes – Latest Data & Support Initiatives \nOBJECTIVE: \nJoin us for a webinar on ROCTAVIAN (valoctocogene roxaparvovec)\, the groundbreaking gene therapy for severe hemophilia A. This webinar will delve into the latest clinical data updates\, showcasing the long-term efficacy and safety of ROCTAVIAN. We’ll also hear a firsthand experience from one of the patients who has received ROCTAVIAN\, offering valuable insights into the real-world impact of this therapy. Finally\, we will explore the comprehensive support programs available to patients\, ensuring access to information\, resources\, and assistance throughout the treatment journey. \nINTENDED AUDIENCE: \nProviders\, HTC staff\, business administrators and decision makers \nSPEAKERS: \n\nPatrick Fogarty\, Executive Medical Director\, US Medical Lead\, Hemophilia\, GMAF\nNick Campbell\, Senior Director\, Patient Support Programs
URL:https://hemoalliance.org/alliance-events/a-webinar-from-biomarin-on-roctavian-improving-patient-outcomes-latest-data-support-initiatives/
CATEGORIES:Members Only,Webinar
ATTACH;FMTTYPE=image/png:https://hemoalliance.org/wp-content/uploads/2022/02/Standard-Manufacturing-Partners-Biomarin_height_191px.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250319T120000
DTEND;TZID=America/New_York:20250319T130000
DTSTAMP:20260403T185735
CREATED:20250305T232342Z
LAST-MODIFIED:20250306T153859Z
UID:70280-1742385600-1742389200@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Presents - Updates from Washington: Administration and Congressional Actions
DESCRIPTION:Date: Wednesday\, March 19th\, 2025\nTime: 12:00pm – 1:00pm ET \n \nWEBINAR TOPIC: \nUpdates from Washington: Administration and Congressional Actions \nOBJECTIVE: \n\nThe current status of government funding for fiscal year 2025.\nThe potential impact of the new Administration’s early actions\, including Executive Orders\, reduction in agency staffing\, changes to the regulatory process and how this may impact federal agencies\, programs\, and policies important to HTCs.\nExpected Congressional actions on a Budget Reconciliation bill(s) to extend tax cuts and find savings in Medicaid and Medicare and the future of 340B Reforms.\n\nTARGET AUDIENCE: \nAll HTC staff or HTC Leadership\, Administration and Policy Teams \nSPEAKERS: \n\nDean Hindenlang\, PhD\, Hemophilia Alliance Vice Chair\nEllen Riker and Miriam Goldstein\, Hemophilia Alliance Federal Policy Advisors\, Artemis Policy Group\n\n  \n\n  \nDean M. Hindenlang has served the nonprofit and government sectors for almost 30 years\, focusing on strategic planning\, administrative oversight and governance\, and coalition-building through an equity-based lens. As Director of Public Policy and Strategic Initiatives with Cascade Hemophilia Consortium\, his work focuses on coalition-building while helping ensure that individuals needing assistance are advocated for in community and government-based capacities. He is a proven leader in assisting members of marginalized and underserved communities. \nMr. Hindenlang holds a Ph.D. in Public Policy and Administration\, completing his doctoral dissertation on equity in community-based programming. He has a Master of Public Administration\, a Master of Science in Marketing and Communication\, a Master of Healthcare Administration\, and a bachelor’s degree in English. Additionally\, he serves as an adjunct professor\, doctoral faculty methodologist\, and subject matter expert at Franklin University. He also offers undergraduate instruction on social justice and cultural awareness at Southern New Hampshire University. \nAs the Director of Public Policy and Strategic Initiatives\, Dean serves Cascade HC by engaging local and state authorities\, as well as elected officials\, on matters of public policy actions\, projects\, and patient education and advocacy. \n\n  \n \n Ellen Riker is a Principal with the Artemis Policy Group\, an association management and lobbying firm she established with Johanna Gray and Elizabeth Karan in April 2020 in Washington\, DC. Ellen advises several national patient organizations and medical societies on federal government affairs and health policy and has worked with the Hemophilia Alliance since 2010. As a federal policy advisor and lobbyist\, Ellen has managed federal strategies for corporate and non-profit organizations\, specializing in public and private insurance reimbursement and coverage policies\, biomedical and health services research\, and public health programs. \nEllen has worked with the many agencies of the Department of Health and Human Services and has been involved in the development of legislation coming out of the House and Senate committees with jurisdiction over Medicare\, Medicaid\, and public health service programs. Ellen served on the professional staff of the House Energy and Commerce Committee from 1983 – 1988\, with particular focus on health policy. Ellen received her master’s degree in health administration from Xavier University and a B.A. with honors from the University of Cincinnati. \n\n  \nMiriam Goldstein joined the Artemis Policy Group as a Senior Policy Advisor in August 2024 after more than seven years at Hemophilia Federation of America. Miriam focuses on federal and state policies impacting patient access to coverage\, access to care\, and affordability. Over the course of her legislative and regulatory work\, Miriam has developed expertise in the Affordable Care Act and insurance reform\, Medicaid eligibility and program requirements; and other keystones of the health policy landscape. \nBefore her time at HFA\, Miriam worked as an attorney in private practice and with the US Securities and Exchange Commission. Miriam earned her J.D. degree from the University of Pennsylvania and her B.A. in history from Yale. She is admitted to practice law in D.C. Miriam lives in Arlington\, Virginia\, and in her free time can often be found cycling on local bike trails with her husband Dave.
URL:https://hemoalliance.org/alliance-events/hemophilia-alliance-presents-update-from-washington-administration-and-congressional-actions/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250320T140000
DTEND;TZID=America/New_York:20250320T150000
DTSTAMP:20260403T185735
CREATED:20250305T194737Z
LAST-MODIFIED:20250306T154410Z
UID:70275-1742479200-1742482800@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Takeda on FVIII Portfolio
DESCRIPTION:Date: Thursday\, March 20th\, 2025\nTime: 2:00pm – 3:00pm ET \n \n  \n  \n  \n \nTITLE: \nTakeda FVIII Portfolio \nOBJECTIVE: \nPlease join Takeda leadership to review Takeda FVIII Products & Resources Available. \nINTENDED AUDIENCE: \nAll HTC staff \nSPEAKER: \nAnthea Cherednichenko\, VP US Hematology Franchise Head \nAnthea leads the sales and marketing teams for Takeda’s Hematology portfolio. Anthea previously served as the General Manager for Takeda Austria. Prior to that role\, she was in Global and European leadership roles in Hematology based out of Switzerland. Originally from Australia\, Anthea spent her early career years in medical device and health IT marketing roles in both Australia and Asia\, before joining Baxter (later acquired by Takeda) in 2013. Anthea holds a Master of Public Health from the University of Sidney and Master of Business Administration from Victoria University.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-takeda-on-fviii-portfolio/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250403T140000
DTEND;TZID=America/New_York:20250403T150000
DTSTAMP:20260403T185735
CREATED:20250306T155911Z
LAST-MODIFIED:20250306T155911Z
UID:70300-1743688800-1743692400@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Novo Nordisk on Alhemo (concizumab-mtci): A new option for patients living with hemophilia A or B with inhibitors
DESCRIPTION:Date: Thursday\, April 3rd\, 2025\nTime: 2:00pm – 3:00pm ET \n \n  \n  \n  \n  \n \nWEBINAR TOPIC: \nAlhemo (concizumab-mtci): A new option for patients living with hemophilia A or B with inhibitors \nOBJECTIVE: \nTo provide a prescribing information overview of the recently FDA approved medication\, Alhemo (concizumab-mtci)\, for patients living with hemophilia A or B with inhibitors. \nINTENDED AUDIENCE: \nAll HTC staff \nSPEAKER: \nCraig Schmidt\, PharmD\, Medical Accounts Associate Director – Novo Nordisk Medical Affairs\n \nBefore joining Novo Nordisk\, Craig had been in the Community Pharmacy and Managed Care settings for 13 years and held various roles and leadership positions. Of note\, Craig was the Pharmacy Director of a Regional Health Plan that served over a million Medicaid\, Medicare\, and Commercially insured patients within the New York Metro area. \nCraig currently serves as a Medical Accounts Director for Novo Nordisk\, a global healthcare company with 100 years of innovation and leadership in diabetes\, obesity\, and rare disease care. Craig is responsible for providing scientific support to payers\, specialty pharmacies\, and other stakeholders that advance the care for patients living with rare diseases. \nCraig earned his Doctor of Pharmacy from St. John’s University\, and is currently based out of Queens\, NY. \n 
URL:https://hemoalliance.org/alliance-events/a-webinar-from-novo-nordisk-on-alhemo-concizumab-mtci-a-new-option-for-patients-living-with-hemophilia-a-or-b-with-inhibitors/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250506T140000
DTEND;TZID=America/New_York:20250506T150000
DTSTAMP:20260403T185735
CREATED:20250418T140148Z
LAST-MODIFIED:20250421T115523Z
UID:70627-1746540000-1746543600@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Pfizer on Complications and challenges associated with hemophilia and a rebalancing approach with HYMPAVZI™ (marstacimab-hncq)
DESCRIPTION:Date: Tuesday\, May 6th\, 2025\nTime: 2:00pm – 3:00pm ET \n \n  \n  \n  \n  \n \nWEBINAR TOPIC: \nComplications and challenges associated with hemophilia and a rebalancing approach with HYMPAVZI™ (marstacimab-hncq) \nOBJECTIVES: \n\nEducate attendees on complications and challenges associated with hemophilia\, the novel mechanism of action of HYMPAVZI\, the BASIS Ph3 clinical trial results and dosage and administration of HYMPAVZI\nDiscuss hypothetical patients who may benefit from HYMPAVZI along with a Q&A session.\n\nSPEAKER: \n \nDr. Robert Sidonio\, Jr.\, MD\, MSc \n\n\n\n\n\n\n\nMedical Director of Hemophilia\, Medical Director of the Clinical Research Office Aflac Cancer & Blood Disorders Center Children’s Healthcare of Atlanta\nAssociate Professor of Pediatrics\, Emory University School of Medicine
URL:https://hemoalliance.org/alliance-events/a-webinar-from-pfizer-on-complications-and-challenges-associated-with-hemophilia-and-a-rebalancing-approach-with-hympavzi-marstacimab-hncq/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250507T130000
DTEND;TZID=America/New_York:20250507T140000
DTSTAMP:20260403T185736
CREATED:20250429T011328Z
LAST-MODIFIED:20250429T012225Z
UID:70761-1746622800-1746626400@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Sanofi - Exploring data and expert perspectives on Qfitlia™ (fitusiran)
DESCRIPTION:Date: Wednesday\, May 7th\, 2025\nTime: 1:00pm – 2:00pm ET \n \n  \n  \n  \n \nWEBINAR TOPIC: \nExploring data and expert perspectives on Qfitlia™ (fitusiran) \nOBJECTIVE: \nDuring this program\, we will explore data and expert perspectives on Qfitlia™ (fitusiran)\, a newly approved prophylactic treatment for patients with hemophilia A and B\, with or without inhibitors. \nSPEAKER: \nVanessa Salinas\, MD – Center for Inherited Blood Disorders Orange\, CA \nDr. Vanessa Salinas is board certified in pediatric hematology-oncology and in general pediatrics. She completed her pediatric hematology-oncology fellowship at CHLA and completed a Coagulation and Bleeding Disorders fellowship at CHLA. She specializes in all areas of hematology with special focus in hemophilia and rare bleeding disorders\, and red cell disorders\, including sickle cell disease and thalassemia. \nDr. Salinas is interested in helping our hemophilia community and empowering our patients and families\, through education and participation. She works closely with the Hemophilia Foundation of Southern California and was awarded as the Medical Professional of the Year in 2019. Dr. Salinas participates in clinical research studies as principal investigator as well as co-investigator. Dr. Salinas advocates for children’s education\, and she enjoys nature and outdoor sports.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-sanofi-exploring-data-and-expert-perspectives-on-qfitlia-fitusiran/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250513T130000
DTEND;TZID=America/New_York:20250513T140000
DTSTAMP:20260403T185736
CREATED:20250418T141315Z
LAST-MODIFIED:20250509T143152Z
UID:70714-1747141200-1747144800@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from BioMarin - A Collaborative Journey - ROCTAVIAN Patient & Provider Perspectives
DESCRIPTION:Date: Tuesday\, May 13th\, 2025\nTime: 1:00pm – 2:00pm ET \n  \n \n  \n  \n \nWEBINAR TOPIC: \nA Collaborative Journey – ROCTAVIAN Patient & Provider Perspectives \nOBJECTIVE: \nJoin us for an insightful webinar exploring the real-world experiences of patients and providers with ROCTAVIAN. Hear firsthand accounts of the treatment journey\, from initial consultations and administration to outcomes and quality of life changes. Discover how collaborative partnerships between patients and healthcare professionals are shaping the future of Hemophilia A patients. Learn about practical considerations\, clinical insights\, and the empowering potential of ROCTAVIAN. \nAUDIENCE: \nProviders and decision makers \nSPEAKERS: \n\nAndrea Buxton\, APNP\, Family Nurse Practitioner\nA patient with severe hemophilia A who has been treated with ROCTAVIAN\n\nAndrea began working as a Nurse Coordinator at the Hemophilia Outreach Center (HOC) in 2014\, and in January 2023\, she began serving as HOC’s first Family Nurse Practitioner. Since starting at HOC\, she has led several initiatives including the administration of gene therapy (both Hemgenix and Roctavian). She currently sits on the Region V-West Regional Council and Regional Gene Therapy Working Group and has served as the ATHN Community of Practice Regional Chair. Prior to her time at HOC\, she worked as an ICU nurse and hospital supervisor at St. Mary’s Hospital in Green Bay\, WI.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-biomarin-a-collaborative-journey-roctavian-patient-provider-perspectives/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250722T130000
DTEND;TZID=America/New_York:20250722T140000
DTSTAMP:20260403T185736
CREATED:20250707T164147Z
LAST-MODIFIED:20250708T150629Z
UID:71108-1753189200-1753192800@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Octapharma - Review The Clinical Benefits of wilate®\, Highlighting The Benefits vs Current vWD Therapies
DESCRIPTION:Date: Tuesday\, July 22nd\, 2025\nTime: 1:00pm – 2:00pm ET \n  \n \n  \n  \n  \n \nWEBINAR TOPIC: \nReview the clinical benefits of wilate®\, highlighting the benefits vs current vWD therapies. \nOBJECTIVES: \n\nUnderstand the attributes of wilate® for vWD: 1:1 ratio which mimics the physiologic activity of vWF and FVIII and the synchronous decay curves\, which facilitates factor activity monitoring.\nUnderstand the absence of vWF or FVIII accumulation when using wilate® during surgery and prophylaxis.\nReview the only product approved for children older than 6 years and adults with any type of vWD and under any clinical circumstance.\n\nAUDIENCE: \nAll HTC Staff \nSPEAKER: \nClaudio Sandoval\, Senior Director of Scientific & Medical Affairs at Octapharma \nClaudio Sandoval is the Senior Director of Scientific & Medical Affairs at Octapharma. Before his current role he was a pediatric hematologist-oncologist for 30 years caring for children with bleeding disorders\, cancer\, sickle cell disease\, and other maladies. Claudio graduated from New York Medical College and trained at Schneider Children’s Hospital in New Hyde Park\, NY and St. Jude Children’s Research Hospital in Memphis\, TN.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-octapharma-review-the-clinical-benefits-of-wilate-highlighting-the-benefits-vs-current-vwd-therapies/
CATEGORIES:Members Only,Webinar
ATTACH;FMTTYPE=image/png:https://hemoalliance.org/wp-content/uploads/2024/06/Octapharma-logo-blue.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250812T130000
DTEND;TZID=America/New_York:20250812T140000
DTSTAMP:20260403T185736
CREATED:20250804T120753Z
LAST-MODIFIED:20250804T120753Z
UID:71288-1755003600-1755007200@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Presents - Big Bill\, Big Insurance Impact Webinar
DESCRIPTION:Date: Tuesday\, August 12th\, 2025\nTime: 1:00pm – 2:00pm ET \n \n  \n  \n \nWEBINAR TITLE: \nBig Bill\, Big Insurance Impact – What do HTCs need to know now about coming health insurance changes and how to prepare? \nSESSION OBJECTIVE: \nThe One Big Beautiful Bill Act and other Washington policies are reshaping the insurance landscape for HTCs and their patients with Medicaid and ACA coverage\, starting as soon as later this month! Please join The Hemophilia Alliance for this essential new webinar series\, kicking off with a comprehensive overview of the coming policy changes. We will also provide strategies for HTCs to start to prepare and advocate to help patients maintain vital coverage. Future sessions will tackle specific policy and HTC operational challenges in detail. \nINTENDED AUDIENCE: \nAll HTC staff \nSPEAKERS: \nJohanna Gray\, Hemophilia Alliance Federal Policy Advisors\, Artemis Policy Group \n \nJohanna Gray serves the Hemophilia Alliance as a federal policy advocacy consultant. She has more than a decade of experience in health policy and government relations\, working with clients to develop and implement successful advocacy strategies involving Congress and federal public health agencies. Johanna’s clients include patient advocacy groups\, physician specialty societies\, and associations of specialized treatment centers. \nJohanna’s expertise in health policy ranges from the broadly applicable private insurance market reforms included in the Affordable Care Act (ACA) to the specifics of Medicare reimbursement for particular physician services. During the ACA negotiations\, Johanna led a coalition of seventy patient advocacy groups and other supporters\, which successfully advocated for the elimination of lifetime limits on private health insurance in the law. \nHaving began her career as an intern for then-Senator Barack Obama\, Johanna held several policy analysis and advocacy positions before joining CRD. Johanna received a Master of Public Administration and Certificate in Health Services Management and Policy from the Maxwell School at Syracuse University and a B.A. in Public Policy Studies with honors from the University of Chicago.
URL:https://hemoalliance.org/alliance-events/member-webinar-hemophilia-alliance-presents-big-bill-big-insurance-impact-webinar/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250827T140000
DTEND;TZID=America/New_York:20250827T150000
DTSTAMP:20260403T185736
CREATED:20250811T132405Z
LAST-MODIFIED:20250811T134758Z
UID:71300-1756303200-1756306800@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Pfizer On Subcutaneous HYMPAVZI (marstacimab-hncq): Learn More From a Real-World Patient Experience
DESCRIPTION:Date: Wednesday\, August 27th\, 2025\nTime: 2:00pm – 3:00pm ET \n  \n \n  \n  \n  \n  \n \nWEBINAR TITLE: \nJuggling Fall Routines Can Be Complicated. Help your patients keep their hemophilia treatment simple with subcutaneous HYMPAVZI (marstacimab-hncq): Learn More From a Real-World Patient Experience. \nOBJECTIVES: \nTo educate attendees on challenges\, shared decision making in hemophilia and introduce HYMPAVZI pen\, dosage\, administration\, and real-world patient experience with HYMPAVZI. \nAUDIENCE: \nAll HTC Staff\, Physicians\, Nurses\, Pharmacists\, etc. \nSPEAKER: \nSteven Pipe\, MD. \nDr. Steven Pipe is a Professor and the Laurence A. Boxer Research Professor of Pediatrics and Professor of Pathology at the University of Michigan\, Ann Arbor\, Michigan\, USA. He is the medical director of the Pediatric Hemophilia and Coagulation Disorders Program and medical director of the Special Coagulation Laboratory. His clinical interests include bleeding and thrombotic disorders and congenital vascular anomalies. Dr Pipe also directs a basic research lab investigating coagulation factor VIII and the molecular mechanisms of hemophilia A. He has been actively involved in clinical trials with novel therapeutics for hemophilia including gene therapy. He was the 2015 recipient of the Leadership in Research Award from the National Hemophilia Foundation. He has served on the Board of Directors for the Hemostasis and Thrombosis Research Society\, as Chair of the Board of Directors for the American Thrombosis and Hemostasis Network and most recently as Chair of the Medical and Scientific Advisory Council to the National Hemophilia Foundation.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-pfizer-on-subcutaneous-hympavzi-marstacimab-hncq-learn-more-from-a-real-world-patient-experience/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250904T130000
DTEND;TZID=America/New_York:20250904T140000
DTSTAMP:20260403T185736
CREATED:20250820T205915Z
LAST-MODIFIED:20250820T210018Z
UID:71357-1756990800-1756994400@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From BioMarin On Advancing Care with ROCTAVIAN® (valoctocogene roxaparvovec-rvox): Clinical Evidence\, Patient Perspective & Contract Opportunities
DESCRIPTION:Date: Thursday\, September 4th\, 2025\nTime: 1:00pm – 2:00pm ET \n  \n \n  \n  \n \nWEBINAR TITLE: \nAdvancing Care with ROCTAVIAN® (valoctocogene roxaparvovec-rvox): Clinical Evidence\, Patient Perspective & Contract Opportunities. \nOBJECTIVES: \n\nExplore updates to HEM Alliance member contract terms and the associated provider economics.\nReview the latest clinical data updates\, describing the long-term efficacy and safety of ROCTAVIAN.\nHear a firsthand experience from a patient who has received ROCTAVIAN\, offering valuable insights into the real-world impact of this therapy.\n\nAUDIENCE: \nAll HTC Staff. \nSPEAKERS: \n\nDawn St Amand\, Associate Director\, BioMarin Medical Science Liaison Hemophilia\nSophie Synder\, Director\, BioMarin US Value and Access\nAndrew W.\, ROCTAVIAN Patient Experience
URL:https://hemoalliance.org/alliance-events/a-webinar-from-biomarin-on-advancing-care-with-roctavian-valoctocogene-roxaparvovec-rvox-clinical-evidence-patient-perspective-contra/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250910T130000
DTEND;TZID=America/New_York:20250910T140000
DTSTAMP:20260403T185736
CREATED:20250827T014952Z
LAST-MODIFIED:20250827T020613Z
UID:71370-1757509200-1757512800@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From BD SUMHAC - Mental Health and Substance Use in the Bleeding Disorders Community
DESCRIPTION:Date: Wednesday\, September 10th\, 2025\nTime: 1:00pm – 2:00pm ET \n \n  \n  \n  \n  \n \nWEBINAR TITLE: \nMental Health and Substance Use in the Bleeding Disorders Community. \nDESCRIPTION: \nThe bleeding disorders community does not have the same access to inpatient and residential mental health and substance use treatment that the general population does. This webinar will talk about the barriers to access the BD community faces and the strategies and resources available to support HTC providers in addressing their patients’ mental health and substance use needs. It will also encourage HTC providers to ask their patients about mental health and substance use concerns early and often and advocate on their behalf when necessary.  \nOBJECTIVES: \n\nTo describe the mental health and substance use needs of the bleeding disorders community.\nTo outline the barriers to inpatient and residential mental health and substance use treatment the bleeding disorders community .\nTo provide data demonstrating that HTC provider advocacy on behalf of patients can overcome barriers to access.\nTo share tools and resources to support your patients’ behavioral health journey and assist in getting people with bleeding disorders access to mental health and substance use care. \n\nAUDIENCE: \nAll HTC Providers. \nSPEAKERS: \nKate Bazinsky\, MPH. \nKate Reinhalter Bazinsky has spent over two decades working in health policy and advocacy at the federal\, state\, and local levels. When her son was diagnosed with severe hemophilia A\, she became a passionate advocate for the bleeding disorders community. She co-founded and now serves as the Chair of the Bleeding Disorders Substance Use & Mental Health Access Coalition (BD SUMHAC). BD SUMHAC is a national\, multi-stakeholder coalition committed to ensuring equitable access to appropriate substance use and mental health treatment facilities for all individuals with bleeding disorders\, with a focus on inpatient and residential facilities. Kate has a Master of Public Health from Johns Hopkins University\, She lives in Wellesley\, MA with her husband and two children. \n \nLucy Ramirez\, LCSW. \nLucy Ramirez is a licensed clinical social worker for the Rush Hemophilia and Thrombophilia Treatment Center at the Rush University Medical Center in Chicago\, Illinois. In her current position\, Ms. Ramirez’s practice primarily involves counseling and educating individuals with bleeding disorders\, their caregivers and family members. She has served as facilitator and guest speaker for patient educational events sponsored by the National Bleeding Disorders Foundation\, the Bleeding Disorder Alliance of Illinois\, the VWD Connect Foundation and the Coalition for Hemophilia B. She serves as the current vice chair of the National Bleeding Disorders Foundation’s Social Work Working Group.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-bd-sumhac-mental-health-and-substance-use-in-the-bleeding-disorders-community/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250917T140000
DTEND;TZID=America/New_York:20250917T150000
DTSTAMP:20260403T185736
CREATED:20250908T140351Z
LAST-MODIFIED:20250912T145220Z
UID:71498-1758117600-1758121200@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Sanofi - Qfitlia Overview - Clinical\, Access\, and Distribution Dynamics
DESCRIPTION:Date: Wednesday\, September 17th\, 2025\nTime: 2:00pm – 3:00pm ET \n \n  \n  \n  \n \nWEBINAR TOPIC: \nQfitlia Overview: Clinical\, Access\, and Distribution Dynamics. \nOBJECTIVE: \nDr. Lynn Malec will review key elements of the Qfitlia efficacy and safety profile and Adam Gurry\, Sanofi Director of Access Strategy\, will provide insights on the Qfitlia access and distribution strategy. \nAUDIENCE: \nAll HTC Providers and Staff. \nSPEAKERS: \n\nLynn Malec\, MD. received her undergraduate and medical school degrees from the University of Wisconsin\, and went on to complete a residency in Internal Medicine and Pediatrics followed by a Pediatric Hematology/Oncology fellowship at the University of Pittsburgh/Children’s Hospital of Pittsburgh. Currently\, Dr. Malec is an Associate Investigator at the Versiti Blood Research Institute and Assistant Professor of Medicine and Pediatrics at the Medical College of Wisconsin. Dr. Malec serves as the Medical Director of the Comprehensive Center for Bleeding Disorders at Versiti. She is actively engaged in the care and research involving both adults and children with hemophilia and other bleeding and clotting disorders; her specific area of clinical research is focused on inhibitors in hemophilia and the impact of new factor products.\nAdam Gurry\, Director of Access Strategy at Sanofi has 19 years of experience on the commercial side of the business holding various roles of increasing responsibility. The past 5 years Adam has been focused on the Rare Blood therapeutic area responsible for the development of payer facing marketing materials and recently led the development of Qfitlia’s access strategy.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-sanofi-qfitlia-overview-clinical-access-and-distribution-dynamics/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251001T130000
DTEND;TZID=America/New_York:20251001T140000
DTSTAMP:20260403T185736
CREATED:20250912T142319Z
LAST-MODIFIED:20250912T143403Z
UID:71518-1759323600-1759327200@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Takeda - On-demand and Surgical Use of ADVATE® [Antihemophilic Factor (Recombinant)]
DESCRIPTION:Date: Wednesday\, October 1st\, 2025\nTime: 1:00pm – 2:00pm ET \n \n  \n  \n  \n \nWEBINAR TOPIC: \nOn-demand and Surgical Use of ADVATE® [Antihemophilic Factor (Recombinant)] \nOBJECTIVE: \nThis session will explore critical aspects of hemophilia A management\, focusing on the unique role of ADVATE in on-demand and perioperative settings. \nAUDIENCE: \nAll HTC Staff. \nSPEAKER: \nJessica Grandoni\, Pharm.D.\, BCPS\, was the Hemostatic Antithrombotic Stewardship Lead Pharmacist (HAT)\, and clinical pharmacy specialist\, at Brigham and Women’s Hospital in Boston\, Massachusetts. She is now a clinical pharmacy specialist at the Dana Farber Cancer Institute’s Anticoagulation Management Service. \nJessica has been involved in several committees and initiatives related to her practice interests of anticoagulation therapy and reversal\, heparin induced thrombocytopenia\, mechanical circulatory support\, drug formulary management and associated guidelines. She is involved in research\, education\, and publications with pharmacy\, hematology\, cardiology\, and the mechanical circulatory support division. She has published one of the top downloaded articles with the American Journal of Hematology and has presented at national and international conferences. Jessica earned her Doctor of Pharmacy degree from Massachusetts College of Pharmacy and Health Sciences University in Boston and completed an ASHP-accredited Post Graduate Year 1 residency at Beth Israel Deaconess Medical Center. She also completed an ASHP-accredited Post Graduate Year 2 cardiology residency at The University of California Davis Medical Center with a focus in anticoagulation and reversal.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-takeda-on-demand-and-surgical-use-of-advate-antihemophilic-factor-recombinant/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251015T140000
DTEND;TZID=America/New_York:20251015T150000
DTSTAMP:20260403T185736
CREATED:20250929T140734Z
LAST-MODIFIED:20250929T140911Z
UID:71627-1760536800-1760540400@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Octapharma - Prophylaxis in VWD: Iron as a Metric of Success at Healing
DESCRIPTION:Date: Wednesday\, October 15th\, 2025\nTime: 2:00pm – 3:00pm ET \n \n  \n  \n \nWEBINAR TOPIC: \nProphylaxis in VWD: Iron as a Metric of Success at Healing. \nWEBINAR SUMMARY: \nA presentation on rethinking prophylaxis in VWD through a lens of healing and iron status. \nThis presentation explores a multidimensional approach to bleeding disorders\, with a focus on von Willebrand Disease (VWD)\, the evolving role of prophylaxis\, and iron deficiency as a measurable indicator of treatment success. By reframing bleeding disorders as healing disorders\, we challenge traditional paradigms and highlight the importance of patient-centered care. \nThrough clinical insights and emerging data\, we examine how iron status can serve as a proxy for bleeding control\, and how prophylactic strategies are reshaping outcomes across all types of VWD. This session invites clinicians\, researchers\, and educators to consider new metrics and models that better reflect the lived experiences of patients and the true impact of therapeutic interventions. \nAUDIENCE: \nAll HTC Staff. \nSPEAKER: \nAmber Federizo\, DNP \nBorn and raised in the rural heart of Nevada\, she has long been driven by a deep commitment to serving those who are often overlooked or underserved. For over a decade\, she provided compassionate diagnosis and treatment to patients of all ages at Nevada’s Hemophilia Treatment Center (HTC)\, with a particular focus on addressing the unique challenges faced by women in the bleeding disorders community. Her unwavering dedication and authentic approach have brought light and hope to vulnerable populations both domestically and internationally. \nIn recognition of her impactful work\, Amber was honored in 2018 as the Humanitarian of the Year by the National Hemophilia Foundation (now known as the National Bleeding Disorders Foundation). Through research\, education\, and advocacy\, she continues to forge new pathways and expand opportunities for individuals and families affected by bleeding disorders.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-octapharma-prophylaxis-in-vwd-iron-as-a-metric-of-success-at-healing/
CATEGORIES:Members Only,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251023T150000
DTEND;TZID=America/New_York:20251023T160000
DTSTAMP:20260403T185736
CREATED:20250924T184603Z
LAST-MODIFIED:20251001T160641Z
UID:71621-1761231600-1761235200@hemoalliance.org
SUMMARY:🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Genentech - Revolutionizing Hemophilia A Care: Nurses’ Insights on the First Subq Prophy for Hem A
DESCRIPTION:Date: Thursday\, October 23rd\, 2025\nTime: 3:00pm – 4:00pm ET \n \n  \n  \n  \n \nWEBINAR TITLE: \nRevolutionizing Hemophilia A Patient Care: Nurses’ Insights on the First Subcutaneous Prophylaxis Treatment for Hemophilia A. \nDESCRIPTION: \nPlease join us for an engaging discussion featuring nurses Jennifer Maahs\, RN\, PNP\, MSN and Joseph Stanco\, MSN\, DNP\, CCRC as they share their perspectives on the evolution of hemophilia A management. We’ll celebrate the personal and collective experiences of nurses and their crucial role in the patient’s treatment journey with the first subcutaneous prophylaxis treatment for hemophilia A. Test your knowledge with trivia while discovering the impact of a treatment with over a decade of clinical trial experience\, as the presentation highlights expert clinical practice insights\, pivotal efficacy and safety data\, and long-term outcomes\, including data in infants. Please bring your questions to have them answered live in the Q&A following the program. \nAUDIENCE: \nAll HTC Staff. \nSPEAKERS: \n\nJennifer Maahs\, RN\, PNP\, MSN – Jennifer Maahs is a Pediatric Nurse Practitioner at the Indiana Hemophilia and Thrombosis Center\, a role she has held since 1993. She earned her MS in Nursing as a Pediatric Nurse Practitioner from Indiana University and a Bachelor of Science in Nursing from The Ohio State University. Her expertise lies in research\, education\, and patient care for hemophilia\, hemostasis\, and thrombosis-related complications. Ms. Maahs is actively involved in developing and implementing educational programs for medical care providers in the bleeding disorder community\, has served on numerous committees and advisory boards\, and is currently the US representative for the World Federation of Hemophilia.\nJoseph Stanco\, MSN\, DNP\, CCRC – Joseph Stanco is a Doctor of Nursing Practice. As a family nurse practitioner he cares for children and adults with bleeding disorders as well as leading various research as the nurse coordinator of the Northwell Health Hemostasis and Thrombosis Center. Beyond his caring for patients\, Joe is the president Hemostasis and Thrombosis Nursing Association\, Executive Committee Member of the New England Hemophilia Region\, New England representative of the NBDF Nursing Working Group.\nMost recently Joe was awarded Nurse of the year at the 2025 NBDF Bleeding Disorders Conference.
URL:https://hemoalliance.org/alliance-events/a-webinar-from-genentech-revolutionizing-hemophilia-a-care-nurses-insights-on-the-first-subq-prophy-for-hem-a/
CATEGORIES:Members Only,Webinar
END:VEVENT
END:VCALENDAR