FeaturedActive yesterdayWhat fills your cups on hard days?Living with a rare disease or caring for someone who has one can be challenging. We want to know how you keep your own cup full while navigating difficult symptoms...Reactions 0 reactions Comments109 replies
FeaturedActive 2 days agoDietary ChangesHi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in...Reactions 0 reactions Comments4 repliesNewly DiagnosedCopingDiet & Nutrition
Active todayDermatomyositisI don’t know anybody else who has dermatomyositis. It is hard wearing all the stuff I need to in order to keep the sun off my skin and explaining this...Reactions 0 reactions Comments2 replies
Active yesterdayLearning to cope w/all my medical issuesI'm new on here, hoping to have some people to chat with. I have 4pups that keep me company everyday. Hugs +snuggling are the best! I'm dealing w/6 autoimmune diseases...Reactions 0 reactions Comments6 repliesCoping
Active 2 days agoInvisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments35 repliesCoping
Active 2 days agoPodcast 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 Comments0 repliesAwareness
Active 2 days agoHow 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 Comments2 repliesAwarenessCopingTips & Advice
Active 3 days agoDBS and previous blood clots I have a complicated history of blood clots that put my scheduled dbs on hold for over 1.5 years. I'm now eligible for the surgery but at an extremely high...Reactions 0 reactions Comments0 repliesCoping
Active 7 days agoRare Diagnosis ExperiencesHow long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions 0 reactions Comments9 repliesNewly DiagnosedSymptomsDiagnosis
Patient with strange symptomsI have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes burning and what seems like nerve pain. She...Reactions 0 reactions Comments4 repliesDiagnosisTips & AdviceSymptoms