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.


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The Rare Advocacy Movement (RAM) is a rare disease community-based advocacy initiative focused on addressing the issues that affect the real world people of the rare disease community.  RAM serves as a community-based Center of Insight and Collaboration for rare disease focused stakeholders seeking authentic collaborations and comprehensive community insights. Each current RAM member has made a public vow to always act in the best interests of the rare disease community through the adopted Code of Conduct for Membership or risk being removed from the RAM membership and network.