Joining the Rare & Ready Coalition means becoming part of a collaborative network of rare disease organizations working to create change—at no cost to you. Members receive regular email action alerts, access to resources and webinars, and opportunities to stay informed on key policy issues. You can participate at the level that works best for your organization, whether that’s taking quick action when alerts arrive or engaging more deeply in advocacy and collaboration.
- Expectations – Joining the Rare & Ready Coalition is designed to be flexible and accessible. There are no membership fees, and organizations can engage at the level that best fits their capacity. While active participation strengthens our collective impact, we recognize that each organization’s time and resources are different—so involvement can range from sharing alerts within your networks to directly engaging in policy initiatives.
- Leadership – The coalition is guided by a collaborative leadership model. A team through Rx4good coordinates policy updates, develops educational content, and organizes opportunities for engagement. Members are invited to share feedback, propose topics for webinars, and contribute ideas that help shape the coalition’s priorities. Leadership is transparent and inclusive, ensuring that diverse perspectives from across the rare disease community inform our collective work.
- Benefits – Your organization gains timely information, practical tools, and connections that make advocacy more effective. Benefits include:
- Email action alerts on key policy developments and opportunities to make your voice heard.
- Access to ready-to-use templates, toolkits, and outreach materials to support your advocacy work.
- Educational webinars featuring experts, policymakers, and peer organizations.
- Opportunities to connect and collaborate with other rare disease organizations to share best practices.
Current Advocacy Group Coalition Members
