I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions148repliesCoping
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 your thoughts or experiences about accessibility in the...reactions4repliesAwarenessWork & EmploymentCoping
Has Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease DiscussionHi everyone, I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow, progressive vision loss. It typically starts with difficulty...reactions2repliesAwareness
Ignored SymptomsI became sick and was treated by doctors who only diagnosed patients by what the books say! They did not listen to me and my symptoms! I suffered for years...reactions2comments