Advocacy

We’re all in this together.

Advocacy is how this community expresses our “B Voice” in asking our elected officials and other leaders for what we need to live happy, healthy lives. There are several ways you can get involved and express YOUR B voice!

Our B Voice advocacy blog tracks developments related to the Affordable Care Act and speaks out on issues like the Children's Health Insurance Program (CHIP) and charitable premium assistance. You can also register as an advocate and join our advocacy efforts.

Advocacy in our community

Resource Library
THE WORLD OF WORK
THE WORLD OF WORK

If you have been working but are finding it increasingly hard to do your job, especially if your physical condition changes, you may wish to consider a number of tools which may help.

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Federal Funding and Hemophilia Treatment Centers
Federal Funding and Hemophilia Treatment Centers

We know that many of you are concerned about the future of federal funding for Hemophilia Treatment Centers (HTCs) given the uncertainty surrounding recent policy changes.

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Rare Pediatric Disease & Priority Review Vouchers
Rare Pediatric Disease & Priority Review Vouchers

Making Treatment More Accessible: How Pediatric Vouchers Help Families Afford Hemophilia Care

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Pfizer Advocacy Meeting
Pfizer Advocacy Meeting

Updates from Pfizer’s Rare Disease Advocacy Collaborative held December 2024.

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2025 Open Enrollment Notification
2025 Open Enrollment Notification

Open enrollment is here!

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Kim Phelan Speaks at Congressional Briefing on Gene Therapies
Kim Phelan Speaks at Congressional Briefing on Gene Therapies

Kim Phelan Speaks on Panel at the Institute for Gene Therapies

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Historic Milestone: The Coalition for Hemophilia B Supports Inaugural Congressional Briefing on Women with Bleeding Disorders
Historic Milestone: The Coalition for Hemophilia B Supports Inaugural Congressional Briefing on Women with Bleeding Disorders
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Advancing health equity and enhancing chronic disease care with key CMS letters
Advancing health equity and enhancing chronic disease care with key CMS letters

Supporting Health Equity and Chronic Disease Care Through Key CMS Letters

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Alternative Funding Mechanisms - A Call to Action
Alternative Funding Mechanisms - A Call to Action
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HHS Enacts New Rule to Enhance Disability Discrimination Protections
HHS Enacts New Rule to Enhance Disability Discrimination Protections
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Turning a No to a Yes—The Art of Advocacy
Turning a No to a Yes—The Art of Advocacy
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Sew Connected! From Hemophilia Advocate to Fashion Innovator
Sew Connected! From Hemophilia Advocate to Fashion Innovator
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The Boundless B Podcast

Boundless B Podcasts for Women
Alternative Funding Programs
Alternative Funding Programs

Alternative Funding Programs with Kollet Barkhouse and James Romano

Showing Up: The Power of Accountability in the Hemophilia Community
Showing Up: The Power of Accountability in the Hemophilia Community

An interview with Wendy Wallner

Join together and learn the proper
ways to infuse.

Have legal questions? Attorney
Donnie Akers has answers.

Learn how others like you are
dealing with Hemophilia B.

Hemophilia B Educational Videos