Active todayUnexplained Night sweats I have been experiencing night sweat every night basically ever since my diagnosis with NMO. Im wondering have anyone else experienced un explained night sweats. I have had all kind...reactions4repliesCopingAwareness
Active 6 days agoHas 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
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...reactionsrepliesAwarenessWork & EmploymentCoping
What does advocacy mean to you?Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few examples. Are you involved or...reactions3repliesAwareness
Hope for Cushing’s DiseaseI was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma Knife. I went into remission and ended up...reactions2repliesAwareness
Dealing w more than oneHi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...reactions31repliesAwarenessCopingDepression
Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I was referred for further tests, and now the...reactions1replyAwareness
Mast Cells trigger my self anyone else have Mast cell and histamine problems? hot and cold intolerance?...reactions8repliesSymptomsAwareness
The Weight of Rare DiseaseThis giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges that many people may not fully understand. Beyond...reactions99repliesTips & AdviceAwarenessCoping
Is there anybody in the medical field that understands ultra rare duchenne muscular dystrophy of the phenotype sex inherited with skewed markersI just want to let the world know that there is a cluster family all living females symptomatic with DMD symptomatic as well as the boys only research and studies...reactions1replyCopingResearch & Clinical TrialsAwareness