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...reactions78repliesCaregivingCopingTips & 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...reactions114replies
Active todayHow 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...reactions58repliesCoping
Active 4 days agoSeeking others with Houge-Janssens SyndromeHello. My son received a diagnosis of Houge-Janssens Syndrome type 3. It is caused by a mutation in the gene designated PPP2CA...reactionsrepliesDiagnosisNewly DiagnosedAwareness
Active 4 days agoHas Anyone Heard of Retinitis Pigmentosa? Rare Eye Disease DiscussionHi everyone, I recently came across Retinitis Pigmentosa (RP) , a rare genetic eye disease that affects the retina and causes slow...reactions3repliesAwareness
Active 5 days agoHurler syndromeMy one-year old granddaughter has just been diagnosed with Hurler syndrome (MPS1). To say I am devastated is an understatement. I can;t...reactions2repliesCoping
Active 5 days agoArt to cope with your rare diseaseDo you use art or creative outlets to cope with your rare disease? If so, please share your favorite projects with us...reactions14repliesCoping
Active 7 days agoWhat are some of the biggest accessibility challenges you face in your daily life due to your rare disease?Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable. Consider sharing...reactions4repliesAwarenessWork & EmploymentCoping
Active 7 days agoFeeling isolated and alone with a severe rare diseaseMy husband and I have tried to do many things to support our daughter diagnosed with metachromatic leukodystrophy, rare terminal brain disease...reactions3repliesCaregivingCopingFriends & Family
Active 8 days agoStange constellation of symptoms - anyone had a similar experience and found a diagnosis or effective treatment?Hello, I've been struggling for years now with massive changes in my body, and I'm really worried for my health, as I...reactionsrepliesDiagnosisSymptomsTips & Advice
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions149repliesCoping