FeaturedActive 5 days agoWhat 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 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 Comments4 repliesNewly DiagnosedCopingDiet & Nutrition
Active 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...Reactions 0 reactions Comments7 repliesCaregivingCopingTips & Advice
Active todayHow 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 Comments8 repliesAwarenessCopingTips & Advice
Active 2 days agoRare 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
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 Comments1 repliesAwareness
Active 2 days agoDermatomyositisI 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
Active 2 days agoInvisible IllnessWhat aspects of your rare disease are invisible to others?...Reactions 0 reactions Comments38 repliesCoping
Active 3 days agoHow 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
Active 5 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