Advocacy

Connect with others on the B-Hub

Perspectives of Patients' Report

Health Equity in the Hemophilia B Community

Perspectivas del informe de los pacientes

Equidad en la comunidad con hemofilia B

View the Report

Ver el Informe

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.

Flyer highlighting coalition and stakeholder partnerships with organizations like NBDF, HFA, Hemophilia Alliance, and others. Includes logos of National Bleeding Disorders Foundation, Institute for Gene Therapies, Hemophilia Alliance, and Families USA. Lists organizations such as All Copays Count Coalition, AFP Task Force, and NORD Coalition.

Advocacy in our community

Resource Library

We stand with The American Society of Hematology (ASH)

Letter to Sec. Kennedy re: the Reinstatement of CDC's Division of Blood Disorders & Public Health Genomics

An Important Message From Our CEO

Critical changes at the CDC’s Division of Blood Disorders and Public Health Genomics affecting our community.

What’s Happening with Insurance Companies

What’s Happening with Insurance Companies—And Why It Affects You

Medicaid Cuts Could Impact Bleeding Disorder Care – Take Action Now!

Reflections on the 2025 Sanofi Patient Advocacy Council

Reflections on the 2025 Sanofi Patient Advocacy Council by Kim Phelan

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.

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.