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...reactions112replies
What is the most annoying unsolicited advice you've heard?What annoying or unhelpful suggestions are you most tired of receiving (unsolicited!) from other people?...reactions31repliesCoping
Dealing w more than oneHi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two rare diseases. How did I get both... Guess...reactions31repliesAwarenessCopingDepression
OPLL ossification of posterior longitudinal ligament Does anyone else have OPLL? Ossification of the posterior longitudinal ligament....reactionsrepliesHealthcare Team
Unexplained Night sweats I have been experiencing night sweat every night basically ever since my diagnosis with NMO. Im wondering have anyone else experienced un explained night sweats. I have had all kind...reactionsrepliesCopingAwareness
Adult Onset Still's DiseaseI would like to find others that have been diagnosed with this. I would like to connect with others that have struggled with this...reactionsrepliesDiagnosis
Anyone Had a Rare Eye Condition First Spotted During a Routine Eye Exam?I recently went in for a standard eye test, thinking I needed a new prescription, but the optician noticed something unusual. I was referred for further tests, and now the...reactions1replyAwareness
Sweet SyndromeAny other folks with Sweet Syndrome that would like to share their experience with getting a diagnosis and treatment?...reactions4repliesDiagnosis
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?...reactions58repliesCoping
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...reactions3repliesCopingDepressionDiagnosis