Mucosal melanoma...I'm not sure if I belong in this group since my oral mucosal melanoma surgery successfully removed the cancer with large and...reactions2repliesAwarenessCopingMental Health
The Diagnostic Maze: Why Was I Misdiagnosed?...Finding the cause of your rare disease can feel like a long journey. Many people with hereditary angioedema (HAE) spend years looking...reactionscomments
Why Putting Your Health First Is Crucial...Putting your health first can feel difficult when you’re living with a rare disease. There are many tasks to manage, and most...reactions1comment
Rare, Relentless, Rising...A rare disease threads itself quietly through a life long before anyone gives it a name. Mine began that way in May...reactions1comment
From Silence to Service: Practicing Rare Disease Advocacy...I didn’t set out to become an advocate. I set out to just survive. Living with a rare disease means learning to...reactions1comment
Partnership In Health, The Turn Around...I was on life support three times. This was the worst flare I have experienced since my diagnosis five years ago; it...reactions1comment
How 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...reactions1replyDiagnosisHealthcare TeamResearch & Clinical Trials
NOW CLOSED: Finding Comfort in Rare: Awareness Month Giveaway...The Finding Comfort In Rare Giveaway is now closed. Thank you for your interest! February is Rare Disease Awareness Month, a crucial...reactions1comment
FeaturedActive yesterdayWhat 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...reactions87replies
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
HAE and the Estrogen Connection: A Guide to Hormonal Triggers...Hereditary angioedema (HAE) is a rare disease that causes painful and sudden swelling in the body. Many factors can lead to these...reactionscomments
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
