Active todayInvisible IllnessWhat aspects of your rare disease are invisible to others?...reactions76repliesCoping
Active todayI wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions142repliesCoping
ALSMy 70 year old husband was diagnosed with ALS 1 month ago. He has dementia as well. He doesn't comprehend what's going on or what's wrong with him. He knows...reactions4repliesCoping
What 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 your thoughts or experiences about accessibility in the...reactions2repliesAwarenessWork & EmploymentCoping
CMT type 4c1, hEDS, PsA, Fibro, Ichthyosis I wish Drs wouldn't laugh off multiple diseases. Even a dna test didn't help. " only thier clinical opinion matters, not a dna test. I paid for my own dna...reactions4repliesCopingDepressionDiagnosis
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...reactions108repliesAwarenessCopingTips & Advice
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!...reactions27repliesCoping
Lymphangioleiomyomatosis (LAM)I am diagnosed with Lymphangioleiomyomatosis or LAM & asthma. Looking for others that have the same thing....reactions3repliesCoping
Recently been diagnosed With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it was and the biggest challenge has been getting...reactions2repliesDiagnosisDepressionCoping
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...reactions77repliesCaregivingCopingTips & Advice