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Bleeding disorders patients depend on access to quality, affordable healthcare for all of their lives.

Send an email to your lawmakers

Action is ongoing

The Real Cost of Healthcare Cuts

 Here’s what’s at stake: Access to care for up to 5 million people could vanish under harsh work reporting requirements. Premiums will skyrocket for Marketplace plans, pushing lifesaving coverage out of reach for families living with bleeding disorders. Vital Medicaid funding to states may be gutted, triggering devastating cuts to services and care providers. And let’s be clear: 30% of our community depends on Medicaid to afford the factor products, emergency treatments, and specialized care they need to survive. 

Send an email to your lawmakers

Action is ongoing

Restore CDC Blood Disorders Programs to Full Operability

Contact your Members of Congress and request that the CDC's Division of Blood Disorders be fully restored, with the staff and resources needed to do this work effectively

Send an email to your lawmakers

Action is ongoing

Sponsor the HELP Copays Bill

Send a message to your Members of Congress and urge them to cosponsor the HELP Copays Act. Together, we can protect access to the treatment our community depends on.  

The Bleeding Disorders Advocacy Network at HFA

Where the bleeding disorders community turns experience into action—and action into change.

Every policy decision about healthcare has real consequences for people living with bleeding disorders. The Bleeding Disorders Advocacy Network at HFA exists to make sure those decisions are informed by the voices of the people who live this reality every day. 

With the Bleeding Disorders Advocacy Network at HFA, advocacy happens year-round, nationwide, in-district, when it matters most!

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Find Your Place in Advocacy

You don’t need to be a policy expert to make a difference.

The Bleeding Disorders Advocacy Network at HFA is designed to meet you where you are, whether you’re taking your first action or ready to lead at the national level. 

  • Advocacy at HFA is flexible, supportive, and community-driven.
  • You can engage through quick actions, ongoing learning, or leadership opportunities.
  • Every advocate plays a role in protecting access to care for the bleeding disorders community. 


Report Your Advocacy Action

Did you take action? Please take a moment to submit an Advocacy Report Back Form. The Report Back Form is a quick way to let HFA know what advocacy action you took. This helps us track our collective impact, follow up when needed, and show lawmakers the strength of the bleeding disorders community.

Advocacy Report Back Form

Your State Bleeding Disorder Organization

State member organizations are the backbone of the bleeding disorders community at the local level. They understand the unique needs, policies, and resources in your state and provide opportunities to connect with other families, advocates, and healthcare partners close to home.

Find Your State Member Organization 

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Where Advocacy Comes Together

2026 Advocacy Network Quarterly Calls

The Bleeding Disorders Advocacy Network at HFA Quarterly Calls are a space for advocates to come together, share experiences, and build skills in a supportive, community-centered environment. These calls are designed to help advocates at every level stay engaged without feeling overwhelmed. 

Whether you’re just getting started or have been advocating for years, these calls are a great way to stay connected and keep momentum going. 

Registration links and reminders will be shared ahead of each call.
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Why Copay Fairness Matters for the Bleeding Disorders Community

Behind every policy term is a real person navigating real bills. Our latest blog explains how copay accumulators impact access to care and what the HELP Copays Act could change.

Click to understand the issue and add your voice.


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