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
When We Are Eager to Undergo Medical Tests...Medical tests are not enjoyable by any means but that doesn't mean one won't feel eager to have a medical test performed...reactionscomments
Webinar: Emergency Preparedness Workshop...Living with a rare disease can mean that emergency room and primary care doctors are unfamiliar with your condition. This can make...reactions2comments
Caregiver's Love...It takes a special person to be a caregiver. There are different types of caregivers; some are partners, some are family, and...reactionscomments
Preparing for End-Stage Kidney Disease...End-stage kidney disease (ESKD) is when your kidneys are barely working or have stopped working. This condition is also called kidney failure...reactionscomments
Getting Beyond the BS (Beyond Severe)...Disclosing a medical condition is tricky territory because we always have to be prepared for the worst possible reaction. Sadly, the scale...reactionscomments
Coping With Specialty Medication Mayhem...If you have a rare disease, you are probably aware of the struggle often involved in finding treatment for rare diseases. Even...reactionscomments
Treating Rare Kidney Diseases...Many rare kidney diseases currently have no cure. However, there are treatment options that can help. There are several factors to consider...reactionscomments
