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
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 Comments6 repliesAwarenessCopingDepression
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
