FeaturedActive 6 days agoBiggest 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 4 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 5 days agoInvisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments42 repliesCoping
FeaturedActive 5 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
Active 5 days agoI 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 Comments2 repliesAwarenessCopingResearch & Clinical Trials
Active 5 days agoMast Cells trigger my self anyone else have Mast cell and histamine problems? hot and cold intolerance?...Reactions 0 reactions Comments1 repliesAwarenessSymptoms
Rare Diagnosis ExperiencesHow long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...Reactions 0 reactions Comments10 repliesNewly DiagnosedSymptomsDiagnosis
Podcast 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 Comments1 repliesAwareness
DermatomyositisI 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 Comments3 replies
How Do You Cope?Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?...Reactions 0 reactions Comments17 repliesCoping