🟥 Member Webinar : Hemophilia Alliance Hosts - An Informational Session from Bayer - Clinical review of the Jivi® PROTECT VIII Trial and insights from HEM-POWR: A Real-World Evidence (RWE) Study of Jivi®
2023-11-17 13:00 - 14:00 (America/New_York)
Date: Friday, November 17, 2023
Time: 1:00pm – 2:00pm ET

TOPIC:
Clinical review of the Jivi® PROTECT VIII Trial and insights from HEM-POWR: A Real-World Evidence (RWE) Study of Jivi®
OVERVIEW:
This session includes key information about Jivi including, safety and efficacy data from the clinical trials, step-wise dosing and Jivi RWE Data from HEM-POWR, a multinational,open-label, prospective, non-interventional, multicenter cohort study of Jivi®.
There will also be a review of the Q4 2023 340B pricing for the Bayer Hemophilia A portfolio under the Hemophilia Alliance Contract.
TARGET AUDIENCE:
All HTC Staff
SPEAKER:

Mark T. Reding, MD.
Director, Center for Bleeding and Clotting Disorders
Professor of Medicine, Division of Hematology, Oncology, and Transplantation
University of Minnesota

For additional important risk and use information, please see the full Prescribing Information for Jivi.
You are encouraged to report negative side effects or quality complaints of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from HEMA Biologics - A different treatment option for Inhibitor patients
2023-11-27 13:00 - 14:00
Date: Monday, November 27, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
A different treatment option for Inhibitor patients
OBJECTIVE:
This presentation will provide an overview of inhibitors and explore the efficacy, safety, tolerability, clinical development, and reasons to consider a different treatment option.
TARGET AUDIENCE:
All HTC Staff
SPEAKER:

Guy Young, MD.
Director, Hemostasis and Thrombosis Center
Director, Clinical Coagulation Laboratory Cancer and Blood Disorders Institute Children’s Hospital Los Angeles
Professor of Pediatrics, University of Southern California Keck School of Medicine

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Takeda - Overview of Adzynma (rADAMTS13) Prescribing Information
2023-11-29 13:00 - 14:00
Date: Wednesday, November 29, 2023
Time: 1:00pm – 2:00pm ET

TITLE:
Overview of Adzynma (rADAMTS13) Prescribing Information
OBJECTIVE:
Inform on the new approval and prescribing information of Adzynma indicated for prophylactic and on-demand use for patients with congenital TTP.
TARGET AUDIENCE:
Hematologists, NPs, nurses, pharmacists
SPEAKER:

Ali Mokdad, MD, PhD, MBA, Medical Director, Takeda

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Takeda - Real-world Characterization of Female Hemophilia A Carriers in the US
2024-01-23 13:00 - 14:00
Date: Tuesday, January 23, 2024
Time: 1:00pm – 2:00pm ET

TITLE:
Real-world Characterization of Female Hemophilia A Carriers in the US
OBJECTIVE:
Summarize recently published real-world data on Female Hemophilia A Carriers in the US, including clinical and healthcare resource utilization information.
TARGET AUDIENCE:
Hematologists, NPs, nurses, pharmacists
SPEAKER:

Jorge Caicedo, MD, Sr. Medical Director, Takeda

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from BD SUMHAC - Advocating for Access to Behavioral Health Treatment for the Bleeding Disorders Community
2024-03-05 13:00 - 14:00
Date: Tuesday, March 5, 2024
Time: 1:00pm – 2:00pm ET

TITLE:
Advocating for Access to Behavioral Health Treatment for the Bleeding Disorders Community
WEBINAR OBJECTIVE:
This presentation will educate HTC providers about the barriers to access to inpatient and residential mental health and substance use treatment facilities for people with bleeding disorders. It will provide tools that HTC providers can use to facilitate access to behavioral health treatment for their patients and resources for responding to denials. Finally, it will briefly introduce the federal and state advocacy work of the Bleeding Disorders Substance Use and Mental Health Access Coalition, and share opportunities for provider involvement.
SPEAKERS:

Kate Bazinsky, MPH – Chair, Bleeding Disorders Substance Use and Mental Health Access Coalition
Emily Wheat, PhD – Psychologist, University of Colorado Hemophilia Treatment Center
Jen Feldman, RN, MSN – Nurse Coordinator, University of Massachusetts Memorial Hemophilia Treatment Center
Lucy Ramirez, LCSW – Social Worker, Rush University Medical Center Hemophilia Treatment Center

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Pfizer - Exploring the Science and Possibilities of Gene Therapy in Hemophilia
2024-03-14 13:00 - 14:00
Date: Thursday, March 14, 2024
Time: 1:00pm – 2:00pm ET

TITLE:
Exploring the Science and Possibilities of Gene Therapy in Hemophilia
WEBINAR OVERVIEW:
By attending this webinar, you will discover the scientific approach of gene therapy, understand gene therapy objectives for patients with hemophilia, and explore the shared decision-making process to accompany your patients in their decision journey.
SPEAKER:

Nathan T. Connell, MD, MPH,
Boston Hemophilia Center
Brigham and Women’s Hospital and Harvard Medical School
Dr. Nathan Connell is Chief of Medicine at Brigham and Women’s Faulkner Hospital, Vice Chair of Medicine at Brigham and Women’s Hospital, Associate Director of the Boston Hemophilia Center, and Associate Professor of Medicine at Harvard Medical School. In addition to his work defining the field of systems-based hematology, he co-chaired the ASH ISTH NHF WFH Guidelines on the Diagnosis and Management of von Willebrand disease.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Genentech - Reinforcing 10+ years of clinical trial experience with a subcutaneous prophylaxis treatment
2024-05-07 14:00 - 15:00
Date: Tuesday, May 7, 2024
Time: 2:00pm – 3:00pm ET

TITLE:
Reinforcing 10+ years of clinical trial experience with a subcutaneous prophylaxis treatment, including the latest data in infants
WEBINAR OBJECTIVE:
Dr. 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.
SPEAKER:

Michael Silvey, DO
HTC Director – Children’s Mercy HTC, Kansas City, MO.
Associate Professor of Pediatrics – University of Missouri-Kansas City School of Medicine.
SPEAKER’S BIO:
Michael 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.

🟥 Member Webinar : Hemophilia Alliance Presents - Hemophilia Alliance Network Services/Emerging Therapy Solutions
2024-05-14 14:00 - 15:00
Date: Tuesday, May 14, 2024
Time: 2:00pm – 3:00pm ET

TITLE:
Hemophilia Alliance Network Services/Emerging Therapy Solutions
A Gene Therapy Payer Contract
WEBINAR DESCRIPTION:
The 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.
HANS 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.
This 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.
SPEAKERS & BIOs:

Roland Lamy, Jr. – Vice President of Payer Relations
Roland 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…

Zack Duffy – Director of Member & Community Relations
Most 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…

🟥 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®
2024-06-05 13:00 - 14:00
Date: Wednesday, June 5, 2024
Time: 1:00pm – 2:00pm ET

TOPIC:
Clinical review of the Jivi® PROTECT VIII Trial and insights from HEM-POWR: A Real-World Evidence (RWE) Study of Jivi®
WEBINAR OVERVIEW:

This 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.
There will also be a review of the Q2 2024 340B pricing for the Bayer Hemophilia A portfolio under the Hemophilia Alliance Contract.

SPEAKER:

Dr. Vanessa K. Salinas-Lunas
Pediatric Hematology
Center for Inherited Blood Disorders
SPEAKER’S BIO:
N/A

🟥 Member Webinar : Hemophilia Alliance Hosts – Practice Considerations for ROCTAVIAN™ (valoctocogene roxaparvovec-rvox) from BioMarin
2024-06-20 14:00 - 15:00
Date: Thursday, June 20, 2024
Time: 2:00pm – 3:00pm ET

Title: Practice Considerations for ROCTAVIAN™ (valoctocogene roxaparvovec-rvox)
Objectives:

Review coverage and typical prior authorization criteria for ROCTAVIAN

Review considerations and pricing education available for single-case agreements

Hemophilia Alliance’s gene therapy support for Member Hemophilia Treatment Centers

Speakers:

Josh Sammon, PharmD, Senior Director, Market Access, Hemophilia

Hemophilia Alliance Team

🟥 Member Webinar : Hemophilia Alliance Hosts – Wilate Prophylaxis in VWD – Results from the WIL-31 Study from Octapharma
2024-06-25 13:00 - 14:00
Date: Tuesday, June 25, 2024
Time: 1:00pm – 2:00pm ET

Title: Wilate Prophylaxis in VWD – Results from the WIL-31 Study
Objectives:
1) Understand the bleeding symptoms experienced by folks with von Willebrand disease
2) Understand the benefits of wilate prophylaxis in von Willebrand disease across different ages and types
3) Understand the lack of von Willebrand factor and FVIII accumulation during wilate prophylaxis
Speaker:

Claudio Sandoval
Senior Director of Scientific & Medical Affairs at Octapharma
Claudio 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.

🟥 Member Webinar : Hemophilia Alliance Presents - Navigating Patient Assistance and Copay Assistance Schemes
2024-07-11 13:00 - 14:00
Date: Thursday, July 11, 2024
Time: 1:00pm – 2:00pm ET

Title:
Understanding the difference between Copay Accumulators, Copay Maximizers, and Alternative Funding Programs.
Objectives:

In 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.
By 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.

Speakers:

Becky Burns
COO & CFO of the Bleeding and Clotting Disorders Institute, Peoria, IL. Click here to learn more about Becky.

Kollet Koulianos
Hemophilia Alliance Payer Relations Consultant. Click here to learn more about Kollet.

🟥 Member Webinar : Hemophilia Alliance Hosts – An interactive discussion on VWD case-based experience from Takeda
2024-07-16 14:00 - 15:00
Date: Tuesday, July 16, 2024
Time: 2:00pm – 3:00pm ET

Discussion Topic: VWD Case-Based Experience
Description:
Join 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.
Speaker:

Maissaa Janbain, MD
Maissaa 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.

🟥 Member Webinar : Hemophilia Alliance Presents - Genetic Testing Program
2024-08-21 13:00 - 14:00
Date: Wednesday, August 21, 2024
Time: 1:00pm – 2:00pm ET

Title:
Hemophilia Alliance Genetic Testing Program
Hemophilia 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.
Who will be eligible for free testing?

Patients 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:

Patient does not have insurance coverage.
Patient does not have coverage for genetic testing under their insurance plan, i.e. not a covered benefit.
Patients who cannot afford the out-of-pocket expenses associated with the testing and are at, or below, 400% of the Federal Poverty Level.

Additional information on the program and how to get started can be found here.

🟥 Member Webinar : Hemophilia Alliance Hosts - Shining a Spotlight: The Journey to Optimize Care in Women and Girls with Hemophilia A
2024-10-17 12:00 - 13:00
Date: Thursday, October 17, 2024
Time: 12:00pm – 1:00pm ET

Topic:
Shining a Spotlight: The Journey to Optimize Care in Women and Girls with Hemophilia A
Objectives:

Shine a light on the topic of women & girls with Hemophilia A
Discuss the complexities in the diagnosis of women & girls with Hemophilia A
Review real-world experiences of women & girls with Hemophilia A

Speaker:
Angela Weyand, MD Co-director, Hemophilia Treatment Center, Clinical Associate Professor of Pediatrics, University of Michigan C.S. Mott Children’s Hospital

Dr. 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.
She has a particular interest in adolescent girls with bleeding and clotting disorders and issues impacting their care including quality of life.

🟥 Member Webinar : Hemophilia Alliance Presents - Navigating The Enhanced Requirements Of DSCSA As A 340B Covered Entity
2024-10-30 13:00 - 14:00
Date: Wednesday, October 30, 2024
Time: 1:00pm – 2:00pm ET

Title:
Navigating The Enhanced Requirements Of DSCSA As A 340B Covered Entity
Objectives:

Review a brief history of the Drug Supply Chain Security Act and the new enhanced requirements.
Understand where covered entities and their affiliated contract pharmacies fit into the supply chain.
Discuss the applicable requirements and potential pathways to compliance.

Speaker:
Michael Fusaro, PharmD
Head of Regulatory Compliance & Senior Pharmacist, The Alliance Pharmacy

Michael 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.
As 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - Explore KOVALTRY® With Confidence by Bayer
2024-11-06 14:00 - 15:00
Date: Wednesday, November 6, 2024
Time: 2:00pm – 3:00pm ET (Updated Starting Time)

Topic:
Explore KOVALTRY® With Confidence
Overview:
Clinical Trial Results, Dosing and Pharmacokinetics of KOVALTRY® in adults, adolescents and children
Speaker:
Maissaa Janbain, M.D., MSCR
Associate Director, Louisiana Center for Bleeding and Clotting Disorders
Associate Professor of Medicine, Tulane University New Orleans, LA

Maissaa 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar On Health Equity From Takeda
2024-11-21 14:00 - 15:00
Date: Thursday, November 21, 2024
Time: 2:00pm – 3:00pm ET

Title:
Health Equity
Description:
Please 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.
Speaker:
Anthea Cherednichenko, VP US Hematology Franchise Head

Anthea 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Sanofi On Real World Surgical Experiences with Altuviiio
2024-12-04 12:00 - 13:00
Date: Wednesday, December 4, 2024
Time: 12:00pm – 1:00pm ET

Topic:
Real World Surgical Experiences with Altuviiio
Description:
This 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!
Speaker:
Shveta Gupta, MD

Shveta Gupta, MD, is a Pediatric Hematologist Oncologist and Medical Co-Director at Alliance OBGYN. Dr. Gupta also serves a the Medical Director for IQVIA.
Dr. 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.
In 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from Novo Nordisk - Unmet Needs in Current Hemophilia Care: From Burdens to Breakthroughs
2024-12-18 13:00 - 14:00
Date: Wednesday, December 18, 2024
Time: 1:00pm – 2:00pm ET

Title:
Unmet Needs in Current Hemophilia Care: From Burdens to Breakthroughs
Description and Session Objectives:
To 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.
Target Audience:
All HTC Staff
Speakers:
Parin Chikani PharmD, MBA
Ryan Rodriguez PharmD, MS, BCPS

Parin 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.

Ryan 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from BioMarin on ROCTAVIAN: Improving Patient Outcomes - Latest Data & Support Initiatives
2025-02-19 13:00 - 14:00
Date: Wednesday, February 19, 2025
Time: 1:00pm – 2:00pm ET

TITLE:
ROCTAVIAN: Improving Patient Outcomes – Latest Data & Support Initiatives
OBJECTIVE:
Join 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.
INTENDED AUDIENCE:
Providers, HTC staff, business administrators and decision makers
SPEAKERS:

Patrick Fogarty, Executive Medical Director, US Medical Lead, Hemophilia, GMAF
Nick Campbell, Senior Director, Patient Support Programs

🟥 Member Webinar : Hemophilia Alliance Presents - Updates from Washington: Administration and Congressional Actions
2025-03-19 12:00 - 13:00
Date: Wednesday, March 19th, 2025
Time: 12:00pm – 1:00pm ET

WEBINAR TOPIC:
Updates from Washington: Administration and Congressional Actions
OBJECTIVE:

The current status of government funding for fiscal year 2025.
The 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.
Expected 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.

TARGET AUDIENCE:
All HTC staff or HTC Leadership, Administration and Policy Teams
SPEAKERS:

Dean Hindenlang, PhD, Hemophilia Alliance Vice Chair
Ellen Riker and Miriam Goldstein, Hemophilia Alliance Federal Policy Advisors, Artemis Policy Group

Dean 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.
Mr. 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.
As 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.

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.
Ellen 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.

Miriam 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.
Before 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Takeda on FVIII Portfolio
2025-03-20 14:00 - 15:00
Date: Thursday, March 20th, 2025
Time: 2:00pm – 3:00pm ET

TITLE:
Takeda FVIII Portfolio
OBJECTIVE:
Please join Takeda leadership to review Takeda FVIII Products & Resources Available.
INTENDED AUDIENCE:
All HTC staff
SPEAKER:
Anthea Cherednichenko, VP US Hematology Franchise Head
Anthea 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.

🟥 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
2025-04-03 14:00 - 15:00
Date: Thursday, April 3rd, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TOPIC:
Alhemo (concizumab-mtci): A new option for patients living with hemophilia A or B with inhibitors
OBJECTIVE:
To provide a prescribing information overview of the recently FDA approved medication, Alhemo (concizumab-mtci), for patients living with hemophilia A or B with inhibitors.
INTENDED AUDIENCE:
All HTC staff
SPEAKER:
Craig Schmidt, PharmD, Medical Accounts Associate Director – Novo Nordisk Medical Affairs

Before 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.
Craig 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.
Craig earned his Doctor of Pharmacy from St. John’s University, and is currently based out of Queens, NY.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Pfizer on Complications and challenges associated with hemophilia and a rebalancing approach with HYMPAVZI™ (marstacimab-hncq)
2025-05-06 14:00 - 15:00
Date: Tuesday, May 6th, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TOPIC:
Complications and challenges associated with hemophilia and a rebalancing approach with HYMPAVZI™ (marstacimab-hncq)
OBJECTIVES:

Educate 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
Discuss hypothetical patients who may benefit from HYMPAVZI along with a Q&A session.

SPEAKER:

Dr. Robert Sidonio, Jr., MD, MSc

Medical Director of Hemophilia, Medical Director of the Clinical Research Office Aflac Cancer & Blood Disorders Center Children’s Healthcare of Atlanta
Associate Professor of Pediatrics, Emory University School of Medicine

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Sanofi - Exploring data and expert perspectives on Qfitlia™ (fitusiran)
2025-05-07 13:00 - 14:00
Date: Wednesday, May 7th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
Exploring data and expert perspectives on Qfitlia™ (fitusiran)
OBJECTIVE:
During 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.
SPEAKER:
Vanessa Salinas, MD – Center for Inherited Blood Disorders Orange, CA
Dr. 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.
Dr. 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from BioMarin - A Collaborative Journey - ROCTAVIAN Patient & Provider Perspectives
2025-05-13 13:00 - 14:00
Date: Tuesday, May 13th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
A Collaborative Journey – ROCTAVIAN Patient & Provider Perspectives
OBJECTIVE:
Join 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.
AUDIENCE:
Providers and decision makers
SPEAKERS:

Andrea Buxton, APNP, Family Nurse Practitioner
A patient with severe hemophilia A who has been treated with ROCTAVIAN

Andrea 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Octapharma - Review The Clinical Benefits of wilate®, Highlighting The Benefits vs Current vWD Therapies
2025-07-22 13:00 - 14:00
Date: Tuesday, July 22nd, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
Review the clinical benefits of wilate®, highlighting the benefits vs current vWD therapies.
OBJECTIVES:

Understand 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.
Understand the absence of vWF or FVIII accumulation when using wilate® during surgery and prophylaxis.
Review the only product approved for children older than 6 years and adults with any type of vWD and under any clinical circumstance.

AUDIENCE:
All HTC Staff
SPEAKER:
Claudio Sandoval, Senior Director of Scientific & Medical Affairs at Octapharma
Claudio 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.

🟥 Member Webinar : Hemophilia Alliance Presents - Big Bill, Big Insurance Impact Webinar
2025-08-12 13:00 - 14:00
Date: Tuesday, August 12th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TITLE:
Big Bill, Big Insurance Impact – What do HTCs need to know now about coming health insurance changes and how to prepare?
SESSION OBJECTIVE:
The 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.
INTENDED AUDIENCE:
All HTC staff
SPEAKERS:
Johanna Gray, Hemophilia Alliance Federal Policy Advisors, Artemis Policy Group

Johanna 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.
Johanna’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.
Having 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Pfizer On Subcutaneous HYMPAVZI (marstacimab-hncq): Learn More From a Real-World Patient Experience
2025-08-27 14:00 - 15:00
Date: Wednesday, August 27th, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TITLE:
Juggling 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.
OBJECTIVES:
To educate attendees on challenges, shared decision making in hemophilia and introduce HYMPAVZI pen, dosage, administration, and real-world patient experience with HYMPAVZI.
AUDIENCE:
All HTC Staff, Physicians, Nurses, Pharmacists, etc.
SPEAKER:
Steven Pipe, MD.
Dr. 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.
