Hemophilia Alliance

🟥 Member Webinar : Hemophilia Alliance Hosts – Practice Considerations for ROCTAVIAN™ (valoctocogene roxaparvovec-rvox) from BioMarin
2024-06-20 14:00 - 15:00 (America/New_York)
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.

🟦 Non-Member Event : 2024 NBDF BDC
2024-09-12 - 2024-09-14
Date: September 12 – 14, 2024 (Atlanta, GA)
Click here for info.

🟦 Non-Member Event : 2024 Foundation for Women & Girls with Bleeding Disorders
2024-09-13 - 2024-09-15
Date: September 13 – 15, 2024 (Long Beach, CA)
Click here for info.

🟦 Non-Member Event : 2024 Self Insurance Institute of America Annual Conference
2024-09-22 - 2024-09-24
Date: September 22 – 24, 2024 (Phoenix, AZ)
Click here for info.

🟦 Non-Member Event : 2024 Partners Physician Academy
2024-09-23 - 2024-09-27
Date: September 23 – 27, 2024 (Carmel, IN)
Click here for info.

🟥 Member Event : 2024 Fall Members Meeting
2024-10-09 - 2024-10-11 | New Orleans Marriott Warehouse Arts District Hotel, 859 Convention Center Boulevard, New Orleans, LA, 70130, United States
Date: October 9 – 11
Location: New Orleans, Louisiana

To download a copy DRAFT AGENDA, click here.
To download a copy GLOSSARY 340B TERMS, click here.

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

🟥 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.

🟦 Non-Member Event : 2024 Advanced Topics I Nursing
2024-10-20 - 2024-10-22
Date: October 22 – 22, 2024 (Indiana, IHTC)
Click here for info.

🟦 Non-Member Event : 2024 ATHN Data Summit
2024-10-22 - 2024-10-23
Date: October 22 – 23, 2024 (Atlanta, GA)
Click here for info.

🟦 Non-Member Event : 2024 NBDF Red Tie Soiree
2024-10-25
Date: October 25, 2024 (Chicago, IL)
Click here for info.

🟥 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.

🟦 Non-Member Event : 2024 Basic
2024-11-11 - 2024-11-13
Date: November 11 – 13, 2024 (Indiana, IHTC)
Click here for info.

🟦 Non-Member Event : 2024 Mountain States Hemostasis Network Regional Meeting
2024-11-12 - 2024-11-15
Date: November 12 – 15, 2024 (Girdwood, AK)
Click here for info.

🟥 Member Event : 2024 Medical Providers & Business Administrators Meeting
2024-11-14 18:00 - 2024-11-16 15:30
Date: November 14 – 16
Location: Las Vegas, Nevada

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

🟦 Non-Member Event : 2024 NBDF Chapter Leadership Seminar
2024-11-15 - 2024-11-18
Date: November 15 – 18, 2024 (San Diego, CA)
Click here for info.

🟦 Non-Member Event : 2024 Motivational Interviewing Workshop
2024-11-18 - 2024-11-20
Date: November 18 – 20, 2024 (Indiana, IHTC)
Click here for info.

🟥 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 CSL Behring - Learn about HEMGENIX from the patient perspective
2024-12-11 13:00 - 14:00
Date: Wednesday, December 11, 2024
Time: 1:00pm – 2:00pm ET

TOPIC:
Learn about HEMGENIX from the patient perspective
OBJECTIVE:
Michael will share his personal experience after receiving HEMGENIX
RECOMMENDED AUDIENCE:
HTC providers, social workers, administration and support staff
SPEAKER:
Michael – Common Factors Advocate Hemophilia B

My Life at a Glance – At the age of four, I was diagnosed with hemophilia B factor IX deficiency. My parents told me that this disorder would limit me and that I would most likely have to progress through life with caution. So, at a very young age, I was forced to make an adult decision. I had to either learn how to manage
my hemophilia or accept the possible limitations that were awaiting a severe hemophiliac. When I was a kid, I made sure to not let hemophilia get in the way by staying on top of managing it. It was hard to accept help from anyone because I wanted to do it on my own. It was my superpower, not theirs.
My previous local support group was amazing. They organized scholarships and had activities that were safe for hemophilia patients. It was a close-knit community. I even volunteered there! After finding the right treatment for me, I have noticed myself living a more stress-free lifestyle; I no longer have to infuse a minimum of twice a month to maintain my factor levels.
My Message to the Community – Hemophilia is our superpower. It’s time to don that cape and advocate for yourself.

🟥 Member Webinar : Hemophilia Alliance Hosts - A webinar from Pfizer on HYMPAVZI: An anti-tissue factor pathway inhibitor
2024-12-17 15:00 - 16:00
Date: Tuesday, December 17, 2024
Time: 3:00pm – 4:00pm ET

TOPIC:
HYMPAVZI: An anti-tissue factor pathway inhibitor
OBJECTIVE:
To educate attendees on the novel mechanism of action of HYMPAVZI, the Ph3 clinical trial results and indicated dosage and administration.
INTENDED AUDIENCE:
HCP
SPEAKER:
Dr. Jennifer Schumacher, PhD, Senior Medical Director, Hemophilia

Jennifer Schumacher Sr. Medical Director has over 21 years of Medical Affairs and Biotech Industry experience. Currently, a senior medical director in hemophilia, Jennifer is the US medical lead for marstacimab. During her tenure at Pfizer, she has held several positions beginning in US Medical Affairs in Oncology and transitioning to medical director in Rare Disease where she has lead the global medical team for transthyretin amyloid (ATTR) cardiomyopathy and served as publications lead. Jennifer joined the US hemophilia medical team in 2023.
Jennifer received her PhD in Pharmacology from the University of Minnesota, Minneapolis, USA and a B.S. in Biotechnology and Chemistry from St. Cloud State University, St. Cloud, USA.
Jennifer is based in Minneapolis, Minnesota and enjoys spending time with her husband and two children. She loves reading, cooking and the great outdoors, snowmobiling in the winter and spending time with family and friends at their cabin in the summer.

🟥 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 Event : 2025 Pharmacists CE Conference
2025-01-22 - 2025-01-24
Date: January 22 – 24, 2025
Location: The Westin San Diego Gaslamp Quarter, San Diego, CA 92101

Hemophilia Alliance is proud to announce the 4th Annual Pharmacists CE Conference. The conference is designed specifically for Hemophilia Alliance Member HTC pharmacists with direct responsibility for 340B HTC dispensations.
There will be 40 spaces available for the in-person conference. Attendees will be randomly chosen from the pool of applicants. For those who cannot attend in person, a virtual option will be available.
Applicants will be notified by November 22nd of their invitation to attend the conference. If you are invited to attend the conference, please verify that you will be able to attend the conference in its entirety before accepting. We will begin working on flight arrangements as soon as November 25th, 2024.
Attendees will require a commitment of arrival on Wednesday, January 22nd by 6:30pm, with the meeting ending at 3:30 pm on Friday, January 24th. Hemophilia Alliance will underwrite each participant’s air travel, transfers to and from the hotel, hotel accommodations and group meals.
The application period is now open through November 15th, 2024

Please contact Mark Plencner with any questions regarding this registration at mark@hemoalliance.org or 701-318-2910.

🟥 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 Event : 2025 Linda Gammage Social Workers CE Conference
2025-02-26 18:00 - 2025-02-28 14:00
Date: February 26 – 28, 2025
Location: Austin, TX

Please contact Jeff Amond with any questions regarding this registration at amond@hemoalliance.org or 608-206-3132.

🟥 Member Event : 2025 Spring Members Meeting
2025-03-09 18:30 - 2025-03-11 15:30
Date: March 9 – 11, 2025
Location: Salt Lake City, Utah

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