Active yesterdayAnyone have any advice about CIP?(Congenital Insensitivity to Pain)I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does anyone have any suggestions on support groups, doctors...Reactions 0 reactions Comments1 repliesAwarenessTips & Advice
I have Myasthenia Gravis and ParkinsonsI would like to find someone else or a group that I can discuss my symptoms and problems with. Some of my symptoms kind of get "mixed up" with other...Reactions 0 reactions Comments3 repliesAwarenessCopingResearch & Clinical Trials
How can we support you?What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?...Reactions 0 reactions Comments11 repliesAwarenessCopingTips & Advice
Mast Cells trigger my self anyone else have Mast cell and histamine problems? hot and cold intolerance?...Reactions 0 reactions Comments1 repliesAwarenessSymptoms
Podcast opportunity for Rare Disease PatientsI have a podcast called Rare connections on YouTube. If any rare disease advocates are interested in talking about their rare condition please message me....Reactions 0 reactions Comments1 repliesAwareness
Ehlers Danlos and Epydermilosis Bulosis I was born in 1958. I had two rare diseases Ehlers Danlos and Epydermilosis Bulosis but neither were severe.It took until 2004 to see a Geniticist before they were both...Reactions 0 reactions Comments1 repliesDiagnosisAwareness
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...Reactions 0 reactions Comments12 repliesCopingAwarenessDepression
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...Reactions 0 reactions Comments2 repliesAwareness
How has living with a rare disease impacted you?Those living with a rare disease are often the experts on their disease. To better understand the patient experience and realities of rare diseases, we are fielding our first Rare...Reactions 0 reactions Comments0 repliesAwarenessResearch & Clinical Trials
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...Reactions 0 reactions Comments1 repliesAwareness