🟥 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 (America/New_York)
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 Event : 2025 Physical Therapists CE Conference
2025-05-14 - 2025-05-16
Date: May 14 – 16, 2025
Location: Phoenix, AZ

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727-688-2568.

🟥 Member Webinar : Hemophilia Alliance Presents - Washington Update Webinar
2025-06-26 13:00 - 13:30
Date: Thursday, June 26th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TITLE:
Washington Update
SESSION OBJECTIVE:
Come to hear the latest on actions in Washington that could impact your HTC and your patients – from 340B reform and federal funding for hemophilia programs, to Congress’ “One Big Beautiful Bill” and how it could lead to people with bleeding disorders losing their Medicaid or ACA health coverage. We’ll answer your questions and give you tools to advocate for your center and patients.
INTENDED AUDIENCE:
All HTC staff
SPEAKERS:

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

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.

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.

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.

🟥 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From BioMarin On Advancing Care with ROCTAVIAN® (valoctocogene roxaparvovec-rvox): Clinical Evidence, Patient Perspective & Contract Opportunities
2025-09-04 13:00 - 14:00
Date: Thursday, September 4th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TITLE:
Advancing Care with ROCTAVIAN® (valoctocogene roxaparvovec-rvox): Clinical Evidence, Patient Perspective & Contract Opportunities.
OBJECTIVES:

Explore updates to HEM Alliance member contract terms and the associated provider economics.
Review the latest clinical data updates, describing the long-term efficacy and safety of ROCTAVIAN.
Hear a firsthand experience from a patient who has received ROCTAVIAN, offering valuable insights into the real-world impact of this therapy.

AUDIENCE:
All HTC Staff.
SPEAKERS:

Dawn St Amand, Associate Director, BioMarin Medical Science Liaison Hemophilia
Sophie Synder, Director, BioMarin US Value and Access
Andrew W., ROCTAVIAN Patient Experience

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From BD SUMHAC - Mental Health and Substance Use in the Bleeding Disorders Community
2025-09-10 13:00 - 14:00
Date: Wednesday, September 10th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TITLE:
Mental Health and Substance Use in the Bleeding Disorders Community.
DESCRIPTION:
The 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.
OBJECTIVES:

To describe the mental health and substance use needs of the bleeding disorders community.
To outline the barriers to inpatient and residential mental health and substance use treatment the bleeding disorders community .
To provide data demonstrating that HTC provider advocacy on behalf of patients can overcome barriers to access.
To 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.

AUDIENCE:
All HTC Providers.
SPEAKERS:
Kate Bazinsky, MPH.
Kate 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.

Lucy Ramirez, LCSW.
Lucy 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Sanofi - Qfitlia Overview - Clinical, Access, and Distribution Dynamics
2025-09-17 14:00 - 15:00
Date: Wednesday, September 17th, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TOPIC:
Qfitlia Overview: Clinical, Access, and Distribution Dynamics.
OBJECTIVE:
Dr. 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.
AUDIENCE:
All HTC Providers and Staff.
SPEAKERS:

Lynn 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.
Adam 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Takeda - On-demand and Surgical Use of ADVATE® [Antihemophilic Factor (Recombinant)]
2025-10-01 13:00 - 14:00
Date: Wednesday, October 1st, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
On-demand and Surgical Use of ADVATE® [Antihemophilic Factor (Recombinant)]
OBJECTIVE:
This session will explore critical aspects of hemophilia A management, focusing on the unique role of ADVATE in on-demand and perioperative settings.
AUDIENCE:
All HTC Staff.
SPEAKER:
Jessica 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.
Jessica 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.

🟥 Member Event : 2025 Fall Members Meeting & Hill Day
2025-10-05 18:30 - 2025-10-07 17:30
Date: October 5 – 7, 2025
Location: Washington, DC
Agenda Overview

Sunday, October 5th – Networking Reception 6:30pm – 8:30pm
Monday, October 6th – Breakfast at 7:30am, followed by Meeting 8:30am – 6:30pm, to include our Hill Day Training and Dinner to follow
Tuesday, October 7th – Breakfast then Hill Day (schedules TBD)

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727-688-2568.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Octapharma - Prophylaxis in VWD: Iron as a Metric of Success at Healing
2025-10-15 14:00 - 15:00
Date: Wednesday, October 15th, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TOPIC:
Prophylaxis in VWD: Iron as a Metric of Success at Healing.
WEBINAR SUMMARY:
A presentation on rethinking prophylaxis in VWD through a lens of healing and iron status.
This 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.
Through 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.
AUDIENCE:
All HTC Staff.
SPEAKER:
Amber Federizo, DNP
Born 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.
In 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.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Genentech - Revolutionizing Hemophilia A Care: Nurses’ Insights on the First Subq Prophy for Hem A
2025-10-23 15:00 - 16:00
Date: Thursday, October 23rd, 2025
Time: 3:00pm – 4:00pm ET

WEBINAR TITLE:
Revolutionizing Hemophilia A Patient Care: Nurses’ Insights on the First Subcutaneous Prophylaxis Treatment for Hemophilia A.
DESCRIPTION:
Please 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.
AUDIENCE:
All HTC Staff.
SPEAKERS:

Jennifer 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.
Joseph 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.
Most recently Joe was awarded Nurse of the year at the 2025 NBDF Bleeding Disorders Conference.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar From Novo Nordisk - Alhemo (concizumab-mtci): A new option for patients living with hemophilia
2025-10-30 14:00 - 15:00
Date: Thursday, October 30th, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TOPIC:
Alhemo (concizumab-mtci): A new option for patients living with hemophilia.
OBJECTIVE:
To provide an update on prescribing information of the recently FDA-approved indication in patients with hemophilia A or B without inhibitors, and supporting data from the explorer8 trial.
AUDIENCE:
All HTC Staff.
SPEAKER:
Ryan Rodriguez, PharmD, MS, BCPS, 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 Bayer - Jivi - With Them as They Grow™ Clinical Study Data for Children 7 to 11 Yrs
2025-11-06 13:00 - 14:00
Date: Thursday, November 6th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
Jivi — With Them as They Grow™ Clinical Study Data for Children 7 to 11 Years.
OBJECTIVE:
This session provides a clinical review of safety and efficacy data drawn from both the PROTECT Kids and Alfa-PROTECT studies. Data from these studies have been combined, as each included participants aged 7 to less than 12 years. The studies were conducted to evaluate the safety and clinical effectiveness of Jivi in previously treated individuals within this age group who have severe hemophilia A. Get the latest data and learn how Jivi may fit the needs of your patients starting at age 7.
Indications: JIVI ® is a recombinant DNA-derived, Factor VIII concentrate indicated for use in previously treated adults and pediatric patients 7 years of age and older with hemophilia A (congenital Factor VIII deficiency) for:

On-demand treatment and control of bleeding episodes.
Perioperative management of bleeding.
Routine prophylaxis to reduce the frequency of bleeding episodes.

Limitations of use JIVI is not indicated for use in:

Children less than 7 years of age due to a greater risk for hypersensitivity reactions and/or loss of efficacy.
Previously untreated patients (PUPs).
Treatment of von Willebrand disease.

AUDIENCE:
All HTC Staff.
SPEAKER:
Dr. Akshat Jain MD, MPH
Director of Sickle Cell Center of Excellence; Faculty Clinical Medicine and Pediatrics; Hematology Oncology and Cell Therapy; Loma Linda University School of Medicine

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from Takeda - VONVENDI® [von Willebrand Factor (Recombinant)] [Now] Approved for Adults and Pediatric Patients
2025-11-12 13:00 - 14:00
Date: Wednesday, November 12th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
VONVENDI® [von Willebrand Factor (Recombinant)] [Now] Approved for Adults and Pediatric Patients.
OBJECTIVE:

Understand the underlying mechanism of VWD and the role of VWF.
Review unmet needs in the treatment of VWD.
Identify the unique characteristics of VONVENDI as the first and only recombinant treatment for patients with VWD.
Review hypothetical patient cases and clinical data for on-demand, prophylactic, and surgical control of bleeds with VONVENDI.

AUDIENCE:
All HTC Staff.
SPEAKER:
Dr. Jonathan Roberts
Dr. Roberts graduated from the Southern Illinois School of Medicine in 2008 and completed his internship and residency in Pediatrics at the University of Illinois College of Medicine at Peoria at OSF HealthCare Children’s Hospital of Illinois in 2011. After finishing his residency, Dr. Roberts completed fellowship in Pediatric Hematology/Oncology/Blood & Marrow Transplantation at the Medical College of Wisconsin/Children’s Hospital of Wisconsin in 2014 and worked as a post-doctoral fellow under Dr. Robert Montgomery and Dr. Joan Cox Gill at the Blood Center of Wisconsin Blood Research Institute. In addition to being the Associate Medical Director/Associate Research Director of BCDI, Dr. Roberts is also an Associate Professor of Pediatrics and Medicine at the University of Illinois College of Medicine in Peoria, IL.
Dr. Roberts’ research areas of interest are in advancing novel laboratory assay development to improve the diagnosis of von Willebrand Disease (VWD) and enhancing individualized clinical management of hemophilia, VWD, and other rare bleeding and classical hematologic disorders. He has received numerous young investigator research awards, has over 100 peer-reviewed research publications and abstracts including lead/senior author publications in Blood, the Journal of Thrombosis and Haemostasis, and the New England Journal of Medicine; and has had grant funding from the National Bleeding Disorders Foundation, World Federation of Hemophilia and National Institutes of Health among others.
Dr. Roberts has a personal passion for the bleeding disorders community as he is also an individual with severe hemophilia A.
Disclosures:
Novo Nordisk, Octapharma, Sanofi, Takeda, Genentech, Pfizer, F. Hoffmann-La Roche AG

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from CSL Behring - The HEMGENIX Toolkit
2025-11-13 13:00 - 14:00
Date: Thursday, November 13th, 2025
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
The HEMGENIX Toolkit
OBJECTIVE:
Overview of the tools and resources available to treatment centers to help support patients eligible and interested in HEMGENIX
AUDIENCE:
All HTC Staff.
SPEAKER:
Bonnie Ben-Shmuel
Bonnie Ben-Shmuel is a seasoned biopharmaceutical marketing leader with over a decade of experience driving commercial strategy, cross-functional execution, and transformational growth across gene therapy, rare disease, immunology, and oncology. As Director of U.S. Marketing for HEMGENIX, she has led initiatives that expanded treatment center readiness, streamlined patient access, and accelerated gene therapy adoption.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from Sanofi - Translating Evidence into Practice: ​Real-World Patient Cases with ALTUVIIIO
2025-12-03 14:00 - 15:00
Date: Wednesday, December 3rd, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TOPIC:
Translating Evidence into Practice: ​Real-World Patient Cases with ALTUVIIIO.
OBJECTIVE:
This session will bring together clinical evidence and real-world experience to illustrate how ALTUVIIIO can optimize treatment and improve outcomes for patients living with Hemophilia A.
AUDIENCE:
All HTC Staff.
SPEAKER:
Vivek Sharma, MD, FACP – Professor of Medicine Division of Hematology/Oncology, University of Louisville

Dr. Sharma is a Professor of Medicine at the University of Louisville at the Division of Hematology/Oncology. He completed his medical school in India and his Internal Medicine Residency as well as Heme/Onc Fellowship at the University of Louisville. He is the Medical Director of the Lifespan Hemophilia program in Louisville and also has interest in other rare hematological diseases.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from CSL Behring - New! Real-World Evidence to Support Optimization of Factor IX Prophylaxis
2025-12-11 14:00 - 15:00
Date: Thursday, December 11th, 2025
Time: 2:00pm – 3:00pm ET

WEBINAR TITLE:
New! Real-World Evidence to Support Optimization of Factor IX Prophylaxis
SUMMARY:
This webinar will discuss recent evidence on prophylactic treatment strategies for hemophilia B from a U.S. real-world retrospective analysis of factor IX products. The session will highlight factor consumption patterns, bleeding outcomes, and comparative effectiveness following a switch to inform clinical decision-making and optimize patient care.
AUDIENCE:
All HTC Staff.
SPEAKER:

Vidhi Desai, Senior Medical Director (Coagulation), US Medical Affairs
Vidhi Desai joined CSL Behring in 2018 as Therapeutic Area Head, Director Medical Affairs for Coagulation Products in North America, providing strategic and tactical medical leadership for Hemgenix®, Idelvion®, Afstyla® and Humate-P®, contributing to key operational and cross-functional projects as a member of the Medical Affairs leadership team.
Prior to joining CSL Behring, Vidhi worked as an attending hematologist at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, focusing primarily on benign hematologic disorders.
Vidhi earned her Doctor of Medicine at New York Medical College and completed her internal medicine and hematology/oncology training at Rutgers Robert Wood Johnson Medical School in New Brunswick, NJ.

🟥 Member Event : 2026 Medical Providers and Business Administrators Meeting
2026-01-11 18:30 - 2026-01-13 15:30
Date: January 11 – 13, 2026
Location: Newport Beach, CA

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727-688-2568.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from CSL Behring - Five-Year Analysis: Efficacy and Safety of HEMGENIX®
2026-01-15 13:00 - 14:00
Date: Thursday, January 15th, 2026
Time: 1:00pm – 2:00pm ET

WEBINAR TITLE:
Five-Year Analysis: Efficacy and Safety of HEMGENIX®
SUMMARY:
Presentation of the published efficacy and safety results of the five-year analysis of the HOPE-B clinical trial follow up.
AUDIENCE:
All HTC Staff.
SPEAKER:

Vidhi Desai, Senior Medical Director (Coagulation), US Medical Affairs
Vidhi Desai joined CSL Behring in 2018 as Therapeutic Area Head, Director Medical Affairs for Coagulation Products in North America, providing strategic and tactical medical leadership for Hemgenix®, Idelvion®, Afstyla® and Humate-P®, contributing to key operational and cross-functional projects as a member of the Medical Affairs leadership team.
Prior to joining CSL Behring, Vidhi worked as an attending hematologist at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, focusing primarily on benign hematologic disorders.
Vidhi earned her Doctor of Medicine at New York Medical College and completed her internal medicine and hematology/oncology training at Rutgers Robert Wood Johnson Medical School in New Brunswick, NJ.

🟥 Member Event : 2026 Pharmacists CE Conference
2026-01-21 18:30 - 2026-01-23 15:30
Date: January 21 – 23, 2026
Location: Tampa, FL

Please contact Theresa Parker with any questions regarding this application at theresa@hemoalliance.org or 727-688-2568.

🟥 Member Event : 2026 Linda Gammage Social Workers CE Conference
2026-02-25 18:30 - 2026-02-27 15:30
Date: February 25 – 27, 2026
Location: Oklahoma City, OK

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727-688-2568.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from Takeda - Overview of Patient Tools & Support Resources
2026-03-05 13:00 - 14:00
Date: Thursday, March 5th, 2026
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
Overview of Patient Tools & Support Resources.
OBJECTIVE:
This presentation will provide an overview of Takeda Hematology Patient tools and Support resources and education on the navigation of these tools and resources.
AUDIENCE:
All HTC Staff.
SPEAKERS:
Carley Riehle – Specialty Pharmacy National Account Director, HEM Alliance Account Lead

Katrina McGrath – Community Education Lead for US HEM Franchise

Nicole Loguidice – Associate Director for Hematology Patient Access Operations

Erik Evans – Regional Director for Rare Diseases/PDT Patient Access – Field

🟥 Member Event : 2026 Spring Members Meeting
2026-03-08 18:30 - 2026-03-10 15:30
Date: March 8 – 10, 2026
Location: Seattle, WA

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727-688-2568.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from Takeda - Inhibitor Development in Hemophilia A: A Continuing Clinical Challenge Despite Therapeutic Advances
2026-03-12 13:00 - 14:00
Date: Thursday, March 12th, 2026
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
Inhibitor Development in Hemophilia A: A Continuing Clinical Challenge Despite Therapeutic Advances.
OBJECTIVE:
After this webinar, participants will be able to:

Describe the clinical impact and risk factors for FVIII inhibitor development in Previously Untreated Patients (PUPs)
Summarize key findings from past PUP studies, including the SIPPET trial
Review Phase 3 PUP trial data for rurioctocog alfa pegol
Discuss implications for monitoring and managing inhibitor risk in current clinical practice

AUDIENCE:
All HTC Staff.
SPEAKERS:

Caitlin Montcrieff, MSN, CPNP – Director, US Medical Hematology & Rare Disease

Robert Sidonio, MD, MSc
Dr. Robert F. Sidonio, Jr, MD, MSc is a Professor of pediatrics at Emory University School of Medicine and the Medical Director of the Hemophilia of Georgia Pediatric Center for Bleeding and Clotting Disorders of Emory. Dr. Sidonio’s clinical and research interests are in the management of pediatric patients with bleeding disorders. His research focus has included women with bleeding disorders, von willebrand disease and the study of inhibitor development in patients with Hemophilia A. Dr. Sidonio was the principal investigator for the Phase 3 clinial trial of rurioctocog alfa pegol in previously untreated patients with Hemophilia A.

🟥 Member Webinar : Hemophilia Alliance Hosts - A Webinar from BrightStar Care - BrightStar Franchising Nursing Care Agreement
2026-03-31 13:00 - 14:00
Date: Tuesday, March 31st, 2026
Time: 1:00pm – 2:00pm ET

WEBINAR TOPIC:
BrightStar Franchising, LLC Master Service Agreement for Nursing Services Now Available to Hemophilia Alliance Member Hemophilia Treatment Centers.
OBJECTIVES:

Understand the services of BrightStar Franchising, LLC. And what services are available to Hemophilia Alliance member HTCs under the Master Service Agreement

Who is BrightStar Franchising, LLC
What services are available through this Master Services Agreement to Hemophilia Treatment Centers (HTC)
What states are BrightStar Franchises located/not located
How do HTCs access the BrightStar local agencies for services

Review of the key aspects of the Master Service Agreement

Key considerations for HTCs
Key considerations for BrightStar Franchises

AUDIENCE:
All HTC Staff.
SPEAKERS:

Wil Cabrera, MBA
VP, National Accounts

Debra Smith, MBA HCM
Sr. Director, Centralized Intake Operations

Joshua Allen, RN
Sr. Director Infusion Services

🟥 Member Event : 2026 New HTC Staff Meeting
2026-04-21 18:30 - 2026-04-23 15:30
Date: April 21 – 23, 2026
Location: Aurora, CO

Please contact Theresa Parker with any questions regarding this registration at theresa@hemoalliance.org or 727-688-2568.
