Active yesterdayHow to find a doctor that cares and is willing to dig deeper...Hi RD friends! My daughter has some type of sero-negative auto-immune condition, and has had it since she was 12 (she's 32...reactionsrepliesDiagnosisHealthcare TeamResearch & Clinical Trials
Finding Comfort in Rare: Awareness Month Giveaway...February is Rare Disease Awareness Month, a crucial time to shine a light on the unique challenges faced by the millions of...reactionscomments
FeaturedActive todayWhat is your go-to item or ritual for finding physical comfort during a flare-up or a hard health day?...Whether it’s a specific pillow, a favorite tea, a warm bath, or a cozy blanket, we want to know what brings you...reactions13replies
Signs and Symptoms of hATTR-PN...Living with unexplained health changes can feel like trying to solve a puzzle with missing pieces. Many people with hereditary transthyretin amyloidosis...reactionscomments
How do you convince a dr. to even LOOK under the hood. Not just at the chassis. I FELT demeaned!!...reactions2replies
Unexplained 2 week fever multiple times...Started in 2022 and just finishing the 5th time. I live in upstate NY 6 months and west central Florida the other...reactions1replyDiagnosis
How is hATTR-PN Diagnosed?...Many people who have hereditary transthyretin amyloid polyneuropathy (hATTR-PN) go through a long and difficult journey before they get a correct diagnosis...reactionscomments
Trying to make complex care feel less overwhelming...Trying to make complex care feel less overwhelmingI keep thinking about something I’ve seen over and over in complex care: the care...reactions2repliesCaregivingNewly DiagnosedCoping
Understanding Hereditary Transthyretin Amyloid Polyneuropathy (hATTR-PN)...Learning that you or a loved one has a rare condition can feel overwhelming. Many people with transthyretin amyloid polyneuropathy (ATTR-PN) spend...reactionscomments
Happy New Year ❤️...Id like discuss topics about rare combination Cardiac Amyloidos and Multiple Myeloma...reactions1replyDiagnosisDiet & Nutrition
Help with mysterious hand condition + gut condition ...Hi, please I need your help. I am dealing with a mysterious condition in my hands (under the skin) that seems completely...reactions1replyDiagnosisSymptomsSide Effects
My Journey with Alport Syndrome...Well, I doubt anyone will read this or even care, but I’m writing it anyway. I’m a single, straight 31‑year-old woman, currently...reactions1comment
Sweet Syndrome...As I mentioned in my previous post, it took nearly 9 years to be diagnosed with Sweet Syndrome. I spent the first...reactions2replies
Does any have a rarer type of EDS?...I was just diagnosed with EDS and Dysautonomia. I'm still unsure which types, though and I'd like to know people's experiences....reactions1replyNewly Diagnosed
Experience with Rare Eye Diseases like Retinitis Pigmentosa?...I recently learned about Retinitis Pigmentosa (RP), which is a rare inherited eye disease that slowly affects the retina and can lead...reactions1replyAwareness
45 years diagnosed Scleroderma...Because outwardly I appear to be fine most people just f fr o not understand how you can look ok but be...reactions5replies
My Rare Disease: Primary Immunodeficiency CVID...Hi. My name is Sandy. Here's my story. All my life I struggled with multiple infections, viruses and sickness. I can remember...reactions2comments
No One Thought to Check...I have had hematuria most of my life. I was diagnosed with it in my 20s. I had so many Intravenous Pyelograms...reactions2comments
Beta Thalassemia ...I’ve gone through growth (extra long arms) and bone problems, enlarged spleen and liver, heart problems (like arrhythmias and heart failure from...reactions1reply
