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), an online survey has been created to uncover answers to these and other rare disease-related questions.


The survey will generate 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. The survey's scheduled close date has been extended to May 31, 2020 to accommodate requests from the community.


All adults in the U.S. age 18 or older who have been diagnosed with a rare disease are invited to take part in the survey to share their thoughts and experiences with rare disease. The survey is anonymous and only takes about 20 minutes to complete. 


Once you complete the survey, please share the survey link with others in your rare disease community, organizations and social media networks. Thank you.


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The Rare Advocacy Movement (RAM) is a group of patient advocacy professionals dedicated to the overall advancement of the rare disease patient advocacy professional ecosystem and landscape. Membership and participation in RAM is subject to the observance of the established Code of Conduct for Membership ("Code of Conduct") and the acceptance of the established and adopted RAM Process Document. All members and affiliates of RAM vow to abide by the established Code of Conduct. Any RAM member or affiliate who may violate the Code of Conduct in parts and/or in its entirety will be subject to immediate removal from the RAM membership and/or affiliation.