This community has come together in a big way to support a local family. Eric Frisbee and his wife, Julie, have two daughters that are living with cystic fibrosis. They…
When you have a rare disease like complex regional pain syndrome (CRPS), sometimes it seems like doctors don't know anything about it. What's worse, it seems like a lot of…
GSK and the National Institute of Allergy and Infectious Diseases have some good news released on Thanksgivng Day and its name is Nucala. Vasculitis is a tough and not fully…
Cancer may have been called the Emperor of all Maladies but FOP-Fibrodysplasia Ossificans Progressiva is certainly the King. We place it lower only because it affects so few; one in every…
Being that the month of November is upon us (can you believe it?), I want to take a moment to express what I'm thankful for. I am thankful to live…
The physicians who left me undiagnosed said "we" missed the brain tumor. WE?! YOU, the 10 or 12 doctors I saw, missed that I had acromegaly. The doctor who finally…
Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter's life. Her family…
Gastroschisis is a birth defect where the intestines and sometimes other abdominal organs such as the stomach or liver are outside the body, rather than inside. This used to come as…
As more states open their arms to the wonders of marijuana (for medical purposes and for fun), they're also opening up a whole new way to look at treating rare…
In honor of liver awareness month, we've got some good news for people living with NASH, or nonalcoholic steatohepatitis. NASH is a kind of fatty-liver disease that is not connected to…
Patient Worthy™ had the unique opportunity to talk to the Coordination of Rare Diseases at Sanford, or CoRDS. Check out the interview below. 1) Can you tell us a little about…
Current treatments for cervical dystonia provide inadequate relief to many. Dystonia twists people and leads to strange postures, involuntary movements and pain. It affects men, women and children. Check out more…
Rare Disease knows no party affiliation! Let’s pass the 21st Century Cures Act in the lame duck session ! The Everylife Foundation Action Center is calling for your action on November…
When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…
I’m impressed of with the direction of the Fabry Support & Information Group (FSIG) and the offerings they have. In August 2016, they had a Fabry Family Get Together at…
Lora Rossi once had a vibrant, active life. She spent her summer days at the beach with friends, she had a job she really enjoyed, and her future looked bright.…
This Halloween season, I want to revisit a post from more than three months ago that originally appeared on GoFundMe. It has since raised more than $18,000. "Grady will never taste…
You may not know Erynn Carroll, but on 5 November 2016, she’ll be taking a step in the right direction—and you can, too! If you live anywhere near Central New…
This past September marked the 16th annual Pain Awareness Month. First established by the American Chronic Pain Association and its partner organizations, this month is an opportunity to raise awareness…
If you live near La Jolla, California and have Complex Regional Pain Syndrome (CRPS)—or are a care partner for a person who does—here’s your chance to make a difference! There’s…
If you’re a fan of the TV show MasterChef USA, you may remember Christina Ha, the contestant that cooked her way into our hearts—and into the winner’s circle!—despite the fact…
The human body is a magnificent machine, and each cell has a role to play. In a way, it's like a jigsaw puzzle that ordinarily is put together perfectly. The only…
Looking for a way to celebrate Dysautonomia Awareness month this year? Then you need to check out Dysautonomia International. Why? Because this incredible organization provides wonderful support to the dysautonomia community…
Wouldn’t it be nice if you could talk to one of those “nationally known” specialists about your aplastic anemia? Well, if you can make it to West Palm Beach, Florida…
Looking for great ways to raise awareness (and, therefore, money) for trigeminal neuralgia? Light up your teal lights? TEAL lights…. as in the color. ‘Cuz if pink worked wonders for…
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