Member and Community Relations Update
Advocacy in Your State – Don’t Miss Out On Providing An HTC Voice!
by Angie Blue, Director of Member and Community Relations
Did you know that many local Bleeding Disorders Chapters and Foundations are active in state advocacy? Many states have Bleeding Disorders Advocacy Committees led by local NBDF/HFA Chapters that welcome involvement and input from the local HTC staff.
Chapters typically convene their committees and all interested community members at the end of the year to discuss priorities for the coming year. If you are not aware of state advocacy efforts in your state, we encourage you to reach out to your local community organizations to see if an Advocacy Committee exists, and if not, we encourage you to team up with your local chapter to work on state level issues together. As a reminder, HTC staff are allowed to educate on advocacy issues and can provide valuable real-world examples of issues.
The Alliance is also rolling out an initiative to better understand and inform our member HTCs of state level legislation and regulations that may affect HTCs and their patients. Look for more on this in 2025. If you have any questions about state advocacy initiatives and how you can get involved, please connect with your local chapter and/or contact your Hemophilia Alliance Member and Community Relations Director.
Member and Community Relations National Patient Organization Partnership Update
by Karen Bowe-Hause, Director of Member and Community Relations
As part of our sponsorship with National Bleeding Disorders Foundation (NBDF) Partners in Progress campaign, the Hemophilia Alliance was once again invited to join the Chapter Leadership Seminar (CLS) in San Antonio, TX on November 18th – 21st. CLS brings Chapter Executive Directors and Board Members, Industry Partners, and NBDF Staff and Board of Directors from across the country together to participate in a series of training activities. Several goals of this annual program include improving a Chapter’s capacity to fundraise, providing innovative programs and services, growing advocacy impact, and sharing non-profit best practices. As a presenting sponsor to CLS, the Alliance was invited to give a 5-minute welcome speech during the opening reception.
Prior to the meeting, the Alliance met with NBDFs leadership team to discuss continued collaboration in 2025 on a variety of programs including:
- The projected launch of an HTC/Chapter ‘Think Tank’ initiative
- Hemophilia Alliance/HTC involvement in NBDFs Capacity Building initiative
- Collaboration to increase focus on addressing the hematologist shortage in HTCs
- Increased emphasis on HTCs as a vital resource for patient care and sustainability of HTCs and protection of 340B pharmacy programs
The Alliance also continues collaboration efforts with Hemophilia Federation of America’s (HFA) leadership team in anticipation of the 2025 2nd Annual Mild Matters Physician Forum. The goal of this provider forum is to assist in bridging the gap between patient advocacy and HTC providers to engage in critical diagnostic and treatment conversations for people with mild bleeding disorders.
Also In This Issue…
Jeff Weighs In
Advocacy Update
- The 2024 Election & Potential Impacts on HTCs
- Hemophilia Alliance and National Bleeding Disorders Organizations Advocate for Improved Categorization of Bleeding Disorders Treatments under US Pharmacopeia
Administration and Operations Update
- Website Access, Member Event Registration and the Data Portal
- Upcoming Meetings
Notes From The Community
- The Alliance Pharmacy Pledges Support for HFA’s Helping Hands Program
- BD SUMHAC Accepting Applications for the 2025 State Advocacy Program!