Welcome! Let's Get to Know Each Other.We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's...reactions83replies
What are some of the biggest accessibility challenges you face in your daily life due to your rare disease?Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing...reactions7repliesAwarenessWork & EmploymentCoping
45 years diagnosed SclerodermaBecause outwardly I appear to be fine most people just f fr o not understand how you can look ok but be...reactions6replies
From Silence to Service: Practicing Rare Disease AdvocacyI didn’t set out to become an advocate. I set out to just survive. Living with a rare disease means learning to...reactions1comment