Rare disease survey launched in collaboration with RAM

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?

We are pleased to announce that in a joint collaboration with the Rare Advocacy Movement (RAM), an online survey has been created to uncover answers to these and other rare disease-related questions.

The survey will generate useful data which we’ll use alongside RAM to help inform public discussions about rare diseases and raise awareness of the challenges that adults living with rare conditions face on a daily basis. A summary of survey results will be published once the survey closes.

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

The survey has also been shared on TPS social media.