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...reactions65repliesCaregivingCopingTips & 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...reactions112replies
Active 3 days agoMy rare disease caused my kidney failure I have a condition called FHx suggestive of Inverted Formin (INF2) mutation with peripheral neuropathy it is what caused me to have kidney failure and a bad disease called CMT...reactions7replies
Active 3 days agoExtremely rare and ambiguous medical case.Greetings everyone, i hope you are all doing well. Time and energy are a luxury that unfortunately i can’t afford anymore matter of fact i am using whats left of...reactions3repliesDiagnosis
Active 3 days agounexplained throat and neck pain for 7 weeks now. hi guys. was hoping anybody could help me out. about 7 weeks ago after an upper respiratory infection, i started to have throat pain. it wasnt like a sore throat...reactions2repliesDiagnosisSymptomsTreatment
Active 3 days agoFinding 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...reactions2repliesHealthcare TeamTreatmentTips & Advice
Active 3 days agoDont knowMy wife has igg4-- retroperitoneal fibrosis -- autoimmune disease. She has a lot of things wrong with her. She takes over 40 pills aday. I have no one to talk...reactions2repliesCaregiving
Active 3 days agoUnknown 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...reactions10repliesSymptoms
Active 3 days agoMedical Mystery - Can anybody help? My current symptoms: Extreme fatigue and tiredness throughout the entire day Dissociation / feeling of faintness Extreme mental fatigue and brain fog Trouble concentrating and poor memory This all started...reactions4repliesDiagnosisSymptoms
Active 3 days agoI am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis. Having both Myasthenia Gravis and Neuromyelitis Optica is extremely difficult. Find medications that address these diseases is an ongoing problem. I would appreciate any advice or feedback. I am also...reactions2repliesCostCopingDiagnosis
Active 3 days agoVEXAS - In Honor of Max Gyllenskog Part 1Here's part 1 of a series I'm working on to try to help other people understand this disease as I'm learning it, in an easier way. I hope you will...reactions1replyAwarenessTreatmentSymptoms
Active 5 days agoVEXAS - In Honor of Max Gyllenskog IntroVEXAS Syndrome: Spread the Word When Max Gyllenskog first began experiencing significant health issues, the puzzling array of symptoms left everyone baffled. It started with a blood clot in his...reactionsrepliesAwarenessDiagnosisResearch & Clinical Trials