Advocating

Advocacy

Looking for a place to take action, learn more, or stay connected to what’s happening in bleeding disorders advocacy?
 Our Advocacy Hub is your go-to resource. The Hub brings together everything you need to advocate with confidence.

• Current Action Alerts. Clear, step-by-step opportunities to contact lawmakers and speak up on issues affecting access to care, coverage, and safety.
• Advocacy Handbook & Training Resources. 
Easy-to-follow guides, recordings, and tools that break down the policy process and help you feel prepared to take action.
• Policy Updates & Priorities. 
Plain-language explanations of what’s happening in Washington and why it matters to the bleeding disorders community.
• Storytelling & Report-Back Tools. Ways to share your lived experience, highlight your advocacy actions, and help ensure community voices are reflected in policy decisions.
• Upcoming Events & Engagement Opportunities. 
Information on advocacy calls, trainings, in-district visits, and national events.

No matter how you choose to engage—sending a message, sharing your story or joining a training—our Advocacy Hub makes it easy to get involved and stay informed.

Five Pillars of Public Policy

• Overview
• Pillar 1: Early Diagnosis for All
• Pillar 2: Continuous Coverage for Life
• Pillar 3: World-Class Comprehensive Care
• Pillar 4: Safety as Duty and Responsibility
• Pillar 5: Clear Pathways to Care

Health Equity Initiatives

• Bleeding Disorders Health Disparities Council
• Building Support for Females with Bleeding Disorders
• IMPACT Workshops
• Rural Access Working Group
• Black Voices Summit Report

Thank you to our Coalition Partners

HFA enjoys a robust and dynamic network of other non-profit partners and coalition groups. Some of our ongoing non-profit partnerships include:

• All Copays Count Coalition
• Alliance for a Stronger FDA
• American Foundation for Suicide Prevention
• American Plasma Users Coalition
• Centers for Disease Control and Prevention
• Committee of Ten Thousand
• Cost & Coverage Collaborative
• Every Life Foundation for Rare Diseases
• Families USA
• Hemophilia Treatment Center Patient Satisfaction Survey Working Group
• I Am Essential
• MAPRx-Medicare
• Mental Health America
• National Bleeding Disorders Foundation
• National Organization for Rare Diseases
• Partnership to Protect Coverage
• The Coalition for Hemophilia B
• The Hemophilia Alliance
• The United States Pharmacopeia Convention