The policies that impact the rare disease community are being shaped now—and patient organizations play a critical role in ensuring they reflect real-world needs.
The RARE Foundation’s Community Congress has brought together patient advocacy organizations, industry leaders, and policy experts to inform and advance solutions across the rare disease landscape. Through this collaboration, members contribute directly to discussions on issues like drug development, access, regulatory pathways, and newborn screening—helping to shape policies that impact patients and families.
Membership Levels
View the costs and benefits of membership for various business types.
Patient Organizations Join Free
Community Congress is designed to be flexible and accessible. Patient advocacy organizations can engage in the areas most relevant to their communities and at a level that fits their capacity.
As a member, you can:
Contribute your community’s perspective to federal and state policy discussions
Stay informed on emerging policy issues and opportunities for engagement
Collaborate with a national network of stakeholders across the rare disease ecosystem
Access resources, tools, and support to strengthen your advocacy efforts
Participation is free for patient advocacy organizations.
At the RARE Foundation, we believe that the most effective policies are informed by those directly impacted. Community Congress provides a platform to ensure those voices are heard.
Be part of the solution. Get your seat at the table. Drive the conversation. Join the Community Congress today.
Who can be a member of the Community Congress?
Patient organizations who qualify under these criteria may join for free and can apply here. Companies and other ecosystem partners may join with a paid membership.
How do you join the Community Congress?
Industry members and consultants should contact fundraising@rareadvocates.org.
Membership is free for patient organizations. A representative of the organization should contact policy@rareadvocates.org or complete the patient organization membership application form.
Contact the Policy Team at policy@rareadvocates.org with any questions.
