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...reactions63repliesTips & AdviceCaregivingCoping
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
Active 3 days agoFATTY LIVER CANCERMY CANCER WAS MISSED ON MY XRAYS 1 1/2 YEARS AGO AND NOW I HAVE A DEATH SENTENCE IS THERE ANYTHING THAT COULD HELP ME Pro Long OR BEAT THIS...reactions3repliesHealthcare Team
Active 4 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?...reactions41repliesCoping
10 Year old with medical mysteryGood Day Everyone My son has been sick for about 4 months. He is seeing doctors and was in the hospital more than once and still he is not beter...reactionsreplies
Traveling With a Rare DiseaseTell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to share with the community?...reactions11repliesTravel
Undiagnosed insane symptoms1st time here. I desperately need help as to why I go numb and loss bodily function and become extremely dizzy if I don't have constant heat on me when...reactions16repliesDiagnosis
Life with Rare Coexistence of Systemic Lupus and Ankylosis SpondylitisHello, I just curious to find the other 8 - 10 individuals living with the Rare Coexistence of Systemic Lupus and Ankylosis Spondylitis (Axial for me ). Tbh, living with...reactionsrepliesCopingTips & AdviceDiagnosis
Living with Mast Cell Activation62 years young and finally finding myself... Who would I have been if I was not sick for 62 years??? Now I am finding out and finally knowing these words...reactions3replies
Anyone experience this and how do we get help??My son and I started having symptoms a year and a half ago, started after a camping trip and we had a lump on different parts of the body ...reactions4repliesSymptoms
I wish others knew that...What is one thing you wish more people knew about living with a rare disease?...reactions69repliesCoping