FeaturedBiggest challenges you face in your current journey?Hi- I'm just curious about how people navigate this journey well. What are your biggest challanges and support needs? Where do people go to get support? What actually makes a...Reactions 0 reactions Comments7 repliesCaregivingCopingTips & Advice
FeaturedWhat 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
Active todayWhat is the most annoying unsolicited advice you've heard?What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...Reactions 0 reactions Comments9 repliesCoping
Active todayUnknown pain disease?Looking for help with my condition. After seeing multiple Dr’s the past three years and the last being a neurologist. It’s a mystery as to what is going on. These...Reactions 0 reactions Comments1 repliesSymptoms
Active todayUndiagnosed still but something is wrong Hi, I know there’s something going on, but doctors dismiss me, don’t listen, or tell me they don’t know what’s wrong but admit there’s something but tell me they can’t...Reactions 0 reactions Comments0 repliesCopingDepressionDiagnosis
Active todayFinding a specialist I learned I not only have osteonecrosis in both my hips, but also my left knee. All due to high doses of steroid for a long period at a time...Reactions 0 reactions Comments0 repliesHealthcare TeamTreatmentTips & Advice
Active yesterdayI 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
Active 2 days agoLearning 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 7 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 Comments11 repliesAwarenessCopingTips & Advice
Active 8 days agoInvisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments42 repliesCoping
FeaturedActive 8 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 Comments7 repliesCopingDiet & NutritionNewly Diagnosed
Mast Cells trigger my self anyone else have Mast cell and histamine problems? hot and cold intolerance?...Reactions 0 reactions Comments1 repliesAwarenessSymptoms