Guiding Advocacy Efforts
Key Priorities
Elevate the Patient Experience in Federal Policymaking
- Inform Members of Congress and federal agencies about the real-world financial and administrative burdens facing patients with rare, chronic, and complex conditions.
- Provide data and patient-informed insights to shape policies that reduce delays in care, insurance barriers, and out-of-pocket costs.
- Ensure that the voices of rare and chronic disease communities are reflected in legislative and regulatory decision-making.
Advance Bipartisan Reforms That Improve Access and Affordability
- Support policies that reduce insurance red tape, including step therapy and prior authorization reforms.
- Promote prescription drug pricing transparency and accountability to lower patient costs.
- Expand access to innovative treatments, home-based care, and cross-state specialty care for vulnerable populations.
- Address disparities by strengthening rural health infrastructure and targeting social drivers of health.
Strengthen and Sustain Federal Health Programs
- Advocate for robust funding for biomedical research, chronic disease prevention, and public health infrastructure.
- Support responsible reform of programs such as 340B and Medicare Advantage to ensure patient-centered outcomes.
- Protect and enhance federal initiatives that serve rare disease, bleeding disorder, and medically complex patient communities.
