FeaturedActive todayBiggest 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...Reactions0reactionsComments63 repliesCaregivingCopingTips & Advice
Having a disease without a name Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found treatments that generally work and keep me off...Reactions0reactionsComments1 repliesTips & AdviceTreatment
The Weight of Rare DiseaseThis giveaway has closed but we still welcome community members to share their perspectives. Living with a rare disease comes with challenges that many people may not fully understand. Beyond...Reactions0reactionsComments99 repliesAwarenessCopingTips & Advice
Leg movement2 years ago I started to develop a disorder in both my legs. Can't move properly. I'm 55 Can't run at all, trip up stairs n more things than I...Reactions0reactionsComments7 repliesTips & AdviceTreatmentDiagnosis
Urgent Help Needed: Undiagnosed Condition in 8-Month-Old with Severe SymptomsHello everyone! I'm posting on behalf of a friend in China whose 8-month-old son has been battling severe, unexplained symptoms since he was just 2 months old. These symptoms include...Reactions0reactionsComments1 repliesDiagnosisSymptomsTips & Advice
1 year later, no diagnosisMom looking for support...It's been a little over a year since all this started. 2 hospital stays each 1 week long. First both hospitals showed results positive for scleroderma, (and...Reactions0reactionsComments1 repliesSymptomsTips & AdviceDiagnosis
help: Persistent Sensation of Heaviness from Clothing on Chest! – ruining my life!I'm a 19-year-old who’s been dealing with a frustrating issue since I was around 8 years old, and it's really starting to wear on me, especially because I'm big on...Reactions0reactionsComments3 repliesSymptomsTips & Advice
High red cells and tired constantly.I have morphea and a spinal malformation, constantly sore points underneath each morphea patch, muscle spasms, tiredness and watery vision. I have a high red cell count, it's at the...Reactions0reactionsComments5 repliesSymptomsSleepTips & Advice
How 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?...Reactions0reactionsComments12 repliesAwarenessCopingTips & Advice
Finding 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...Reactions0reactionsComments1 repliesHealthcare TeamTreatmentTips & Advice