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 life....Reactions 0 reactions Comments53 replies
How far do you travel for medical care?In your diagnosis or treatment journey, how far do you have to go to see doctors and specialists you feel can help you? Have you ever moved to access better...Reactions 0 reactions Comments4 replies
undiagnosed with normal blood workThese are my symptoms and I just wonder if anyone else has the same thing and has been diagnosed with something where medicine or therapy has helped. My symptoms are...Reactions 0 reactions Comments8 repliesDiagnosis
Traveling With a Rare DiseaseTell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?...Reactions 0 reactions Comments4 repliesTravel
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
Workplace ExperiencesHas your rare disease impacted you in the workplace? What kind of experiences (positive or negative) have you had with disclosing to managers or coworkers?...Reactions 0 reactions Comments2 repliesWork & Employment
Madelung'sI am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He does not use the internet. His neck and...Reactions 0 reactions Comments3 replies
Red rash in my mounthI have red "rash" or something in her mounth for more then 2 months. What do you think this is?...Reactions 0 reactions Comments1 replies
Hypoglobulimia Just wondering how many others have this, mine was med induced....Reactions 0 reactions Comments9 repliesTips & AdviceResearch & Clinical TrialsNewly Diagnosed
Addison's Disease Most people have never heard of Addison's Disease or know what adrenal glands are and what they do. I have a little information about it, but not much. I was...Reactions 0 reactions Comments2 replies