Rare Versus Under-diagnosed Diseases...I have 3 autoimmune conditions: celiac disease, Graves’ disease, and thyroid eye disease. One of these is categorized as a rare disease...reactionscomments
Life as a Rare Disease Parent: My Motherhood Journey...My motherhood journey has come with many unique challenges that most other mothers cannot relate to. It’s been a deep journey that...reactionscomments
Cast Your Votes! What Do You Want to See on RareDisease.net?...RareDisease.net is an online community where you can read articles by Health Leaders, connect with others in forums, discover others' stories and...reactionscomments
Complications of Primary Biliary Cholangitis: What to Know...Primary biliary cholangitis (PBC) is a chronic condition that impacts the bile ducts in the liver. Although PBC primarily affects the liver...reactionscomments
10 Things I Wish People Understood About Rare Diseases...Being a caregiver to someone with a rare disease can be a complex journey. It not only alters the life of the...reactionscomments
Rare Disease International...As a person living with a rare disease, it can be difficult to find other people who also suffer from the same...reactionscomments
How can we support you?...What information do you hope to find on our site? Is there anything in the rare community as a whole you would...reactions13repliesAwarenessCopingTips & Advice
'I Have What?!' What Happens When a New Diagnosis Does Not Make Sense?...As a complex rare disease patient, I'm used to receiving new diagnoses and even reaching the point of desperately wanting a diagnosis...reactionscomments
Ehlers Danlos and Epydermilosis Bulosis ...I was born in 1958. I had two rare diseases Ehlers Danlos and Epydermilosis Bulosis but neither were severe.It took until 2004...reactions2repliesDiagnosisAwareness
Medicaid Needs to Do Better for Rare Patients and Families...I recently took my 3 children to their pediatrician for the last time before our new insurance kicked in at the beginning...reactionscomments
Rare Diagnosis Experiences...How long did it take you to get diagnosed with your rare disease? Did you receive any misdiagnoses?...reactions98repliesNewly DiagnosedSymptomsDiagnosis
How I Travel With a Chronic Illness..."Still round the corner, there may wait, a new road or a secret gate." – J.R.R. Tolkien Living in a body with...reactionscomments
Jesse Mercury...Jesse Mercury is the host of the Major Pain podcast, where he interviews people living with chronic illness and disability. The goal...
Bowled Over Again (in a Good Way!): Being Proactive With My Health Goals...My arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned. Slight and...reactionscomments
5 Rare Life Challenges: A Caregiver Perspective...As a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely...reactionscomments
How to Promote Legislative Advocacy for Rare Diseases...Can you imagine living with a condition so rare that it often feels like you are fighting a battle alone? The lack...reactionscomments
Do you allow your child with a rare disease to go on overnight school field trips?...If so, what tips have worked for you and your child? How did you prepare your child and yourself for this experience?...reactions3repliesCaregivingTravel
Role Reversal and the Patient-Caregiver Relationship...I have been a rare disease patient since my first rare disease diagnosis of familial adenomatous polyposis at age 8. My mother...reactionscomments
Patient with strange symptoms...I have a patient who has severe pain in her ear that extends down to the inside of her mouth and causes...reactions4repliesDiagnosisTips & AdviceSymptoms
How to Care for Someone With Congenital Adrenal Hyperplasia...Caring for someone with congenital adrenal hyperplasia (CAH) is difficult. A CAH diagnosis can feel overwhelming since it is a lifelong genetic...reactionscomments
