Advocacy

Advocacy in our community

Resource Library

Apr 15, 2026

The Reality for Women with Hemophilia B

Apr 15, 2026

Women with Hemophilia B deserve to be seen. Diagnosed. Believed.

Apr 15, 2026

Jan 15, 2026

Senator Honors The Coalition for Hemophilia B for 35 Years of Service

Jan 15, 2026

The Coalition for Hemophilia B (CHB) is proud to announce that it has been awarded a New York State Senate Proclamation recognizing 35 years of service to individuals and families affected by hemophilia B.

Jan 15, 2026

Jan 13, 2026

New Jersey Joins Growing List of States Passing Copayment Accumulator Bans

Jan 13, 2026

January 2026 Advocacy Update

Jan 13, 2026

Nov 21, 2025

The Coalition Calls on Congress to Pass Two Key Bills

Nov 21, 2025

The Coalition Calls on Congress to Pass Two Key Bills. Children with Rare Diseases Can't Wait.

Nov 21, 2025

Nov 4, 2025

Update on What’s Happening in Government

Nov 4, 2025

November 2025 - Update on What’s Happening in Government

Nov 4, 2025

Oct 31, 2025

Act Now: Keep Health Care Affordable!

Oct 31, 2025

Millions of Americans depend on the Affordable Care Act (ACA) for health insurance, over 26 million people, including many living with chronic conditions.

Oct 31, 2025

Jul 28, 2025

Major Health Policy Changes Ahead

Jul 28, 2025

Major Health Policy Changes Ahead:

What the 2025 Budget Reconciliation Act Means for People with Hemophilia B

Jul 28, 2025

Jun 9, 2025

Patient Coalition Condemns House-Passed H.R. 1 for Stripping Coverage from Millions

Jun 9, 2025

Patient Coalition Condemns House-Passed H.R. 1 for Stripping Coverage from Millions

Jun 9, 2025

Jun 2, 2025

Your Voice is Needed: Protect Medicare, Medicaid, ACA, and SNAP

Jun 2, 2025

Devastating Budget Bill Passed in House: We Must Keep Fighting

Jun 2, 2025

May 23, 2025

Devastating Budget Bill Passed in House: We Must Keep Fighting

May 23, 2025

Devastating Budget Bill Passed in House: We Must Keep Fighting

May 23, 2025

May 1, 2025

Roadmap for Advocacy

May 1, 2025

Roadmap for advocacy

May 1, 2025

Apr 8, 2025

We stand with The American Society of Hematology (ASH)

Apr 8, 2025

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

Apr 8, 2025

The Boundless B Podcast

Boundless B Podcasts for Women

A New Era for Women with Bleeding Disorders

What if the biggest barrier to care isn’t access but the words we use?

The Trail of AIDS (Part 2)

What happens when grief becomes evidence — and evidence becomes a national reckoning?

Save One Life, Save the World

What does it mean to save a life—not just with medication, but with dignity, opportunity, and hope?

Voices from the Hemophilia B Symposium

In this special episode of Boundless B, host Kai M Sorensen takes listeners inside the 35th Anniversary Symposium of the Coalition for Hemophilia B.

Healthcare Advocacy

Healthcare Advocacy: Navigating Policy, Misinformation, and the Power of Storytelling with Alison Betty of alignco

The Power of Patient Stories with Erik Paulsen

The Power of Patient Stories with Erik Paulsen, Chairman at the Institute of Gene Therapies

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.

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