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 is scheduled to close on March 31, 2020.
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.