What does the current rare disease landscape look like in the U.S. for adults?

What are the challenges of living with a rare condition?


In a joint collaboration between the Rare Advocacy Movement (RAM) and THE PLANNING SHOP (TPS), a survey was created to uncover answers to these and other rare disease-related questions.


The survey generated informative data which RAM and TPS will use to help inform public discussions about rare diseases, and raise awareness of the challenges that you, and other adults living with rare conditions face on a daily basis. A summary of survey results will be published on this page. 


All adults in the U.S. age 18 or older who have been diagnosed with a rare disease were invited to take part in the survey to share their thoughts and experiences with rare disease. 

The survey is now closed and the data is currently being reviewed and analyzed. Please follow us on social media to stay up-to-date on updates and publications.

This RAM COLLABORATION is hosted by the following RAM members:

Nadia Bodkin
Michael Losow
Rachelle Dixon
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The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex ecosystem and unique dynamics of the rare disease patient advocacy landscape. RAM serves as community-based professional network and Center of Insight (COI) for rare disease focused stakeholders. The RAM membership is comprised of a network of patient advocacy community expert professionals that have vowed to abide by the established Code of Conduct for Membership.