FDA approves therapies for rare and genetic conditions
Your state Medicaid program may set eligibility criteria which make it more difficult to access the latest therapies for rare and genetic conditions
Patients with rare or genetic conditions may face significant delays before FDA-approved therapies are covered
What is the Rare & Ready Coalition?
The Rare & Ready Coalition ensures that patients with rare and genetic conditions get access to the care they need, when they need it. Rare & Ready welcomes EVERYONE to join us! Whether you are a patient, caregiver, healthcare provider or member of a patient advocacy group, your voice matters. It costs nothing to join, and your level of involvement is completely up to you.
When you join the Rare & Ready Coalition, you become part of a supportive network of rare disease organizations working together to create change. Our model is built on connection, education, and action — giving you the tools and community you need to make a difference.
Collaborative Network
Coalition members are part of an active community of rare disease organizations. Together, we share knowledge, learn from one another’s experiences, and build collective strength to advance policies that benefit the rare disease community.
Stay Informed on State Policy
We keep you up to date on state-level policies and legislative developments that affect the rare disease community. You’ll have access to timely policy briefings, legislative updates, and opportunities to learn how these issues impact patients and families in your state.
Engage at Your Own Pace
Resources and Education to Power Your Advocacy
Our Members
Current Advocacy Group Coalition Members
