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...Reactions0reactionsComments59 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...Reactions0reactionsComments111 replies
Active todayPlease help my wife, she has a disease that is difficult to diagnoseSymptoms include crooked tongue, difficulty swallowing, bloody sputum, and headaches from the back of the head to the top of the head and eye sockets. The pain lasts for about...Reactions0reactionsComments0 repliesTreatment
Active yesterdayI wish others knew that...What is one thing you wish more people knew about living with a rare disease?...Reactions0reactionsComments65 repliesCoping
Active 4 days agoThe 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
Active 5 days agoWhere do you find support?Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed...Reactions0reactionsComments12 repliesCopingFriends & Family
Undiagnosed 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...Reactions0reactionsComments4 repliesCopingDepressionDiagnosis
Feeling pure psychological discomfort after being on medicationHi everyone! I am currently on Effexor, Seroquel and Risperidal. I have been on Effexor since Janauary 2024, Risperidal since March 2024, and Seroquel since November 2024. I have been...Reactions0reactionsComments0 repliesDiagnosis
Animal CompanionsDo you have a pet that has helped you cope with life with a rare disease? Tell us about them and/or share a pic!...Reactions0reactionsComments26 repliesCoping
What helps you avoid burnout or chronic illness fatigue?Personal Strategies – What routines, habits, or lifestyle changes help you avoid burnout or fatigue? (e.g., sleep, nutrition, mindfulness)...Reactions0reactionsComments0 repliesCopingMental Health