What a Caregiver Means to Me...I talked with an old friend from high school who just found out he has a rare disease about how much our...reactions4comments
Who has GI issues with CMT?...I have severe constipation and gastroparesis with CMT. Does anyone else suffer GI issues?...reactions2repliesDiet & Nutrition
Dealing w more than one...Hi, I'm happy to have run across this email, community forum. I currently suffer with HS & also Hydrocephalus. These are two...reactions31repliesAwarenessCopingDepression
Active todayI wish others knew that......What is one thing you wish more people knew about living with a rare disease?...reactions150repliesCoping
Welcome! Let's Get to Know Each Other....We are glad you are here! Please introduce yourself and let us know which rare disease impacts your or your loved one's...reactions70replies
Children and Rare Diseases: Tips for Navigating Emergency Care...When your child lives with a rare disease, you expect to make regular visits to the doctor for care. But sometimes the...reactionscomments
Annie-Danielle Grenier...I raise awareness, educate and advocate for people living with rare and invisible diseases, having a few myself. I have hypermobile Ehlers-Danlos...
Acromegaly: My Ups and Downs...The year my son Tyler entered kindergarten, I started the school year active and involved in Tyler’s classroom. But, by December I...reactions2comments
What to Expect During a Disability Hearing (In America)...My phone buzzed angrily. It was 20 minutes after the hour, and I’d been scrambling about frantically. I was searching for documents...reactions3comments
Dwayne Wilson...Dwayne was previously a health leader on RareDisease.net. My name is Dwayne Wilson and I have Late on-set Pompe Disease. Pompe, it's...
Applying for Disability Webinar...Applying for disability benefits can seem like an overwhelming ordeal. Coping with a rare disease can make the process feel even more...reactionscomments
Grieving Loss in the Rare Disease Community...Rare disease communities provide a unique and much-needed benefit to their members. For many of us, it's through these communities that we...reactionscomments
5 Tips for Practicing Self-Care With a Rare Disease...As a person continuously navigating life with multiple chronic illnesses, self-care is an interesting concept for me. How I wish that a...reactionscomments
Natalie Abbott...Natalie Abbott was diagnosed with Moebius syndrome, a rare neuromuscular movement disorder, at birth and with rare autoimmune diseases throughout childhood. When...
Keeping Your Medical Records Organized...Keeping track of your medical records is essential for your health, especially when you or your child has a rare disease. With...reactionscomments
Terms to Know When You Have Adult-Onset Still’s Disease...Even if you have lived with adult-onset Still's disease (AOSD) for years, new terms can come up often. Whether you are new...reactionscomments
Surprise! It's Rare Disease Day!...It's that special day of the year again. You know the one. The day when all of your friends bestow many a...reactionscomments
When Illness Calls: A Tale of One Rare Disease...As a person with narcolepsy type 1, I am used to my life not looking like other people's. My average day with...reactionscomments
The Impact of Rare Disease on Siblings...A rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the...reactionscomments
How Is Adult-Onset Still’s Disease Treated?...In people with adult-onset Still’s disease (AOSD), the immune system does not work the way it should. Instead, their immune system proteins...reactionscomments
