Planning a Vacation With a Rare Disease...Summer is here! Time to travel to new places, experience local cuisine, and have some fun in the sun! Okay, easier said...reactions2comments
Traveling With a Rare Disease...Tell us about your travel experiences? How do you prepare for a long or short trip? Do you have any tips to...reactions20repliesTravel
Rare Disease in Children...Were you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little...reactions2replies
West Nile Virus...Long term walking difficulty. Walk very slowly with a cane....reactionsrepliesExerciseCopingTreatment
Hypoglobulimia ...Just wondering how many others have this, mine was med induced....reactions9repliesTips & AdviceResearch & Clinical TrialsNewly Diagnosed
Hygiene and Chronic Illness: 5 Tips for "Lazy" People...Editor's Note: This article was written by Mikayla Bianchin, a Health Leader living with cystic fibrosis. Read more of Mikalaya's articles at...reactionscomments
Guys, I'm so rare, it seems I'm the only one here with autoimmune cholangitis...Please tell me I'm not the only one with this diagnosis, here...reactions2replies
Am I Too Chill About My Rare Disease?...Recently, I had lunch with my fellow RDs (Rare Diseasers). These are some of my friends who also live with hemophilia. Since...reactionscomments
Michelle Fruhschien...Michelle here- aka Mamabear. My 3-year-old daughter, Hailey, was diagnosed at 8 months of age with a rare diagnosis, Jordan's syndrome, a...
Addison's Disease ...Most people have never heard of Addison's Disease or know what adrenal glands are and what they do. I have a little...reactions3replies
CIDP (Chronic Inflammatory Demyelinating Polyneuritis)...I was an RN but didn't know about this disease. I would love to hear from people who have it, what kind...reactionsreplies
Finding My Calling...I have always known I was meant to help others. It feels like an intense need to share my light and bring...reactions2comments
Living Life With Rare Diseases: Giving Up vs Not Giving Up...As I continue forward in my healthcare journey as a person with multiple rare diseases, I have begun to accept that I...reactions5comments
Living With X-linked Hypophosphatemia...X-linked hypophosphatemia (XLH) is a rare genetic condition that lasts a person’s entire life. It is caused by a mutation in the...reactionscomments
How Is X-linked Hypophosphatemia Diagnosed?...X-linked hypophosphatemia (XLH) is a chronic, progressive disease, so early diagnosis is important to stop symptoms from getting worse. XLH is diagnosed...reactionscomments
Misconceptions About My Rare Disease...It's hard to know exactly what someone else is going through, especially if the other person has a rare disease that most...reactions2comments
Disability Pride Month With a Rare Disease...Disability Pride Month is celebrated in July to commemorate the signing of the Americans with Disabilities Act (ADA) in 1990. As someone...reactions1comment
How I Start Difficult Conversations About My Rare Disease...When living with a rare disease, setting boundaries around physical limitations is important. As a person with narcolepsy, I've had to learn...reactions11comments
SMS...Does anyone on here have Smith-Magenis syndrome or have family members with it?...reactionsrepliesDiagnosisCopingTips & Advice
What to Know About Newborn Screening and Rare Diseases...Newborn screening (NBS) is a program in the United States that tests all babies for certain treatable medical conditions. Early detection and...reactionscomments
