In This Issue...
Jeff Weighs In
Notes From The Community
Celebrate World Hemophilia Day – Access for All
by Angie Blue, Director of Member and Community Relations
World Hemophilia Day is celebrated every year on April 17th to raise awareness of bleeding disorders worldwide. This special day, which began in 1989, was started in honor of Frank Schnabel, the founder of the World Federation of Hemophilia, whose birthday falls on April 17th. Mr. Schnabel lived with severe Hemophilia A and established the World Federation of Hemophilia in 1963.
This year’s theme for World Hemophilia Day is “Access for All: Women & Girls Bleed too”, highlighting the importance of improving diagnosis and treatment for women/girls across the globe. This theme is particularly relevant to HTCs, which have been dedicated to expanding care to women and girls for many years. Check out https://wfh.org/world-hemophilia-day/ for more information and materials.
Bleeding disorders organizations plan special community events and celebrations for World Hemophilia Day each year. All across the globe, monuments, buildings, and bridges are lit up RED for World Hemophilia Day. If your city doesn’t currently participate – make it a goal for 2026! Most city or government organizations have publicly available forms to submit lighting requests.
Additionally, World Hemophilia Day provides a fantastic opportunity to spread the word about your HTC and the essential work you are doing! Partner with your hospital or university’s communications department or a local news station to feature a story about your HTC during April. Improving awareness and advocacy for blood disorders is more important than ever!
5th Annual HTC Unite for Bleeding Disorders National Walk Challenge
by Karen Bowe-Hause, Director of Member and Community Relations
The Hemophilia Alliance is collaborating with NBDF on its 2025 Unite for Bleeding Disorders National Walk campaign by launching the 5th annual HTC Wall of Walkers Challenge. The objective of our collaboration is to increase HTC participation in the NBDF Walk program to provide support for local Chapters.
All of the scheduled walks can be found at National Hemophilia Foundation – Upcoming Events (uniteforbleedingdisorders.org). To register your HTC, select the walk you’d like to register for and then you’ll be taken to the event page where you can register. HTCs can also request promotional postcards to distribute to HTC patients and families. Our hope is that this promotional item will help recruit new families to local Chapter Walk programs.
All Alliance Member HTCs participating will be acknowledged on the HTC Wall of Walkers located on the NBDF website, Unite Day landing page as well as on the Alliance website. The HTC team name along with photos or a logo will be featured in a scrolling fashion and the site will be continuously updated throughout the walk season. In addition, a $1500 travel grant to the 2026 NBDF Bleeding Disorders Conference will be awarded to the 5 Alliance member HTCs raising the most funds for their local Chapters.
In addition, this year there will be a ‘Rookie of the Year’ award for HTCs that have not participated in the Unite Walk in the past. These HTCs will not only be supporting their local Chapters but will have a chance to compete for a $1500 travel grant to offset expenses to send a staff member to NBDFs 2026 Bleeding Disorders Conference.
Member and Community Relations Update
Linda Gammage Social Work Conference a Success
by Amy Wilson, LICSW – M Health Fairview, Ctr for Bleeding and Clotting Disorders and Kathaleen Schnur, MSW, LCSW – Hemophilia Center of Western PA
Fifty-five-member HTC social workers from across the country gathered in Austin, TX for the 27th Annual Linda Gammage Social Work Conference in February. This year’s conference explored our workplace environments through a trauma-informed care lens, while also exploring the impact of artificial intelligence (AI) and responsible use of technology. Attendees found the sessions to be thought-provoking and dynamic, sparking meaningful conversations about fostering safer, more supportive workspaces.
The conference opened with a full-day training on Trauma-Informed Care (TIC) from an organizational perspective. Led by Dr. Mandy Davis, PhD, LICSW, from Portland State University’s School of Social Work. She is the director of Trauma Informed Oregon. The session deepened participants’ understanding of trauma and its far-reaching effects—not only on patients but also on colleagues and care teams. Dr. Davis explored strategies for harm reduction, workplace healing, and managing toxic stress, equipping attendees with practical tools to enhance wellness and resilience in their own HTCs.
Day two featured Dr. Sara E. Berger, a Senior Research Scientist at IBM research specializing in applied technology ethics. In an engaging and interactive session, she covered AI fundamentals and its emerging role in social work and healthcare, and within bleeding disorders. Dr. Berger encouraged participants to approach AI thoughtfully and responsibly, using collaborative tools to examine its ethical implications and envision a future where AI supports both the profession and the patients it serves.
The Linda Gammage Social Work Planning Committee and conference extend a heartfelt thank you to CSL Behring for its continued support since the conference’s inception in 1997. This event remains a meaningful and impactful cornerstone for HTC social workers and their clinical practice.
Apply to Serve on Linda Gammage Social Worker Conference Planning Committee
by Jeff Amond, Director of Member and Community Relations
To be eligible to serve on the Planning Committee, candidates must be employed at a federally funded Hemophilia Treatment Center (HTC) that is a member of the Hemophilia Alliance. This volunteer role offers a unique opportunity to collaborate with fellow professionals in shaping the content and structure of the annual conference. More information on applying to serve on the Committee can be found here. Interested candidates should submit application requirements to Jeff Amond at amond@hemoalliance.org by Friday May 2nd.
Advocacy and Legal Update
Senate 340B Bipartisan Working Group Announces New Members
by Issie Karan, Legal Counsel
In late March, the Senate 340B bipartisan working group, commonly referred to as the Gang of Six, announced three new members. Joining Senators Jerry Moran (R-Kan.), Shelley Moore Capito (R-W.V.) and Tammy Baldwin (D-Wis.) will be Senators Markwayne Mullin (R-Okla.), John Hickenlooper (D-Colo.) and Tim Kaine (D-Va.).
Last Congress, this bi-partisan group collaborated on draft legislation, titled the “SUSTAIN 340B Act.” Included in the draft bill were detailed reforms to some areas of the 340B Program, such as contract pharmacies, transparency, and program integrity. After much dialogue with stakeholders and changes to the discussion draft, many expected the bill to be formally introduced at the end of last year. However, this did not happen amid reports of disagreements over final language.
The Hemophilia Alliance engaged with the Gang of Six extensively last Congress, providing feedback on its request for input and meeting with them following the release of the draft legislation. With the announcement of its new members, we expect to reignite our conversations with this group to ensure the HTC perspective is considered in any 340B reform proposals.
Closely Watching Medicaid on the Federal and State Levels
by Miriam Goldstein, Artemis Policy Group
Cuts to Medicaid are under active consideration by federal and state lawmakers in 2025. Because Medicaid is an important source of coverage for children and adults with bleeding disorders, insuring about 1/3 of our patient community, the Hemophilia Alliance is closely monitoring policy changes that could impact access to coverage and care. Federal and State Medicaid Highlights can be found here.
Please contact your MCR Team member or George Oestreich at george@hemoalliance.org if you have any questions on the state bills and Miriam Goldstein on the federal issues at mgoldstein@artemispolicygroup.com.
Administration and Operations Update
Hot Topics at the Spring Member Meeting – What’s your HTC elevator speech?
At the Spring Member Meeting, the Alliance introduced a fresh, interactive approach: attendees were encouraged to jot down their burning questions on notecards during the first day. The meeting sparked valuable discussions and concluded with an important takeaway: every HTC should have a concise “elevator speech” prepared, clearly articulating how HTC 340B Program stands apart from other 340B programs. Feel free to take the following draft and make it your own.
“Hot Topics” is here to stay! Mark your calendar and prepare your questions for the upcoming Fall Member Meeting, paired with an impactful Hill Day in Washington, D.C., October 5–7, 2025. Reach out to your MCR contact for more detailed information.
Exclusively for Medical Providers and Business Administrators – Save The Date for the Next MP/BA Meeting January 11-13th, 2026
The goal of the MP/BA Meeting is to foster greater collaboration between the clinical and business sides of our member HTCs, enhance mutual understanding, engage the community, and plan for the future to ensure sustainability of the HTC model. The Hemophilia Alliance will underwrite each participant’s air travel, transfers to and from the hotel, conference hotel accommodations (room and tax) and group meal expenses.
Session topics include leadership development, succession planning, staffing models and expanding clinical services, novel therapies, payer developments, emerging hot issues, team building and time for networking.
Agenda Timeline
Sunday, January 11th
1:00-5:15 pm – Optional Pre-Conference
Session 1: HTC/340B Basics / Session 2: Setting up an In-House pharmacy
6:30 pm – Networking session
Monday, January 12th
7:30 am – 5:00 pm; 6:00 pm – Group dinner
Tuesday, January 13th
7:30 am – 12:00 noon – End of meeting
Member Meetings FAQs
We get a lot of questions about our member meetings – specifically, what is the purpose and how are they funded? Hemophilia Alliance hosts nine in-person meetings, 4 of which offer CEUs. Alliance meetings are a member benefit. All member meetings aim to provide opportunities for networking and sharing of best practices. A primer on the Alliance meetings can be found here.
Please reach out to Theresa Parker, Manager of Meetings and Events, with questions at theresa@hemoalliance.org
2025 & 2026 MEETINGS | DATE |
|---|---|
Nurses CE Conference [REGISTRATION CLOSED] Travel arranged by Hemophilia Alliance | April 27 – 29, 2025 (Orlando, FL) |
New HTC Staff Meeting [REGISTRATION CLOSED] Travel arranged by Hemophilia Alliance | April 29 – May 1, 2025 (Orlando, FL) |
Physical Therapists CE Conference [REGISTRATION CLOSED] Travel arranged by Hemophilia Alliance | May 14 – 16, 2025 (Phoenix, AZ) |
Fall Member Meeting & Hill Day [SAVE THE DATE] Registration opening June, 2025 | October 5 – 7, 2025 (Washington, DC) |
Medical Providers & Business Administrators Meeting [SAVE THE DATE] | January 11 – 13, 2026 (Location: TBD) |
Pharmacists CE Conference [SAVE THE DATE] | January 21 – 23, 2026 (Location: TBD) |
We’d love your input on future newsletter topics