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.
We’d love your input on future newsletter topics
Also In This Issue…
Jeff Weighs In
Member and Community Relations Update
- Linda Gammage Social Work Conference a Success
- Apply to Serve on Linda Gammage Social Worker Conference Planning Committee
Advocacy and Legal Update
- Senate 340B Bipartisan Working Group Announces New Members
- Closely Watching Medicaid on the Federal and State Levels
Administration and Operations Update
- Hot Topics at the Spring Member Meeting – What’s your HTC elevator speech?
- Exclusively for Medical Providers and Business Administrators – Save The Date for the Next MP/BA Meeting January 11-13th, 2026
- 2025 & 2026 Meeting Schedules