ADVOCACY - ACTION - CHANGE

The Bleeding Disorders Advocacy Network at HFA

By The Numbers

Our Impact

1,826

Advocates

1,559

Actions Taken

Active Campaigns

Take Action Today!

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

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.

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

Many Communities. One Advocacy Network.

Explore the map to see where members of HFA’s Bleeding Disorders Advocacy Network live. Every highlighted state represents advocates bringing the bleeding disorders community’s experiences to lawmakers. Join the Network to help make sure your state is represented and its voices are heard.

See Yourself in Advocacy

The Bleeding Disorders Advocacy Network is made up of people who show up for each other. Advocates across the country share stories, learn together, build friendships, and meet with lawmakers to speak up for the care our community needs. Along the way, they find one of the best parts of advocacy: each other.

The HFA Advocacy Retreat brings that spirit together in Washington, DC. Advocates prepare side by side, then take their stories and shared priorities to Capitol Hill. For many, it’s a chance to see how much they can do with the support of a community behind them.

Your path can start right here. Join the Network, take an action, share your story, or come to a training. Get involved now and help shape what we do together next.

Join the Bleeding Disorders Advocacy Network

Coverage Should Lead to Care

Did insurance rules change what you owed, how your copay assistance counted, or where you had to seek help paying for treatment? Tell HFA what happened. Your experience can help us show lawmakers where the pathway to prescribed treatment breaks down and what must change.

Share your story

Action is ongoing

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

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!

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.

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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