University of California, San Francisco scientists have developed a new vaccine that treats diffuse intrinsic pontine glioma (DIPG), a rare childhood brain tumor. To learn more about DIPG, click here. Great…
Each year pharmaceutical companies spend millions developing and testing potential treatments. These drugs have to go through many levels of testing to make sure they are safe and effective. And…
The close knit Algiers community in New Orleans united together once again for a charity walk to raise awareness and money for Stevens-Johnson Syndrome (SJS). SJS is a highly rare…
It was a classic story of boy-on-dialysis-waiting-for-a-kidney-transplant meets girl. The year was 1997. Larry Wetsch's kidneys were in dire state, hardening due to a rare disease called glomerulonephritis. Glomerulonephritis happens when…
4-year-old Dimi loves to hang out with other preschoolers his age, play in the park, and ride his bike like a regular kid, but his mother Frances is fearing his…
Whenever I was looking for something I had lost as a kid, my mom would offer the same, unhelpful advice: It'll show up in the last place you look for…
Great news for the rare disease community! Ultragenyx Pharmaceuticals reported back positive results from its phase 3 study of the treatment drug burosumab in adults with X-linked hypophosphatemia (XLH). XLH…
Welcome Back Patient Worthians! This week, we have stories of brave patients and caregivers who run, march, and make innovative steps to reach recovery. A young girl marches after her…
Our gut bacteria may be responsible for antiphospholipid syndrome (APS). What do you need to know about the ordinary gut bacteria known as commensals, and APS? Keep reading, or view…
Rett syndrome is a severe, genetic neurological disorder, which primarily affects girls. While it was once thought to be a form of autism, it's now understood as its own condition.…
Imagine waking up one morning feeling pain shoot all over your body. It seems like it's out of nowhere. When you try to move your neck, it will barely budge.…
Canavan disease is an isolating condition. It's a rare disorder caused by a genetic mutation that can be passed on in families. It damages nerve cells, so they're not able…
Amir Khan is one of the leading athletes from Singapore. He competes in mixed martial arts, and has made a name for himself in ONE Championship. He's tough, fast, and…
African Americans face a far higher danger of developing multiple myeloma-- especially African American men, who run three times the risk of a diagnosis. These groups are also about half…
Sophie Walsh is in need of help. She was diagnosed with the rarest of the rare forms of cancer. She was only two years old when her mom, Sandra, and…
In 1994, Deanna Babiuk-Black began to feel sick very frequently. Her typical care-free personality was being challenged with illness and her personal words to live by "take a negative and…
Chocolate, chips, steak. These are a few of our favorite things, but for Dublin brothers Mark and Peter Lavery, they are forbidden It doesn't stop there. Cheese, eggs, beans and…
In Tecoman, Colima, western Mexico, Luis Manuel is now a ten month old baby, but he weighs as much as a nine-year-old. Luis Manuel tops the scales at 66 pounds,…
13-year-olds Annie Leeds and Kenley Montez are two peas in a pod. They both share a love for American Girl dolls. They both suffer from a rare disease, which helps…
Fourteen years ago, Sabrina "Bria" Baumann's mother, Sophia, saw a mass growing in a sonogram. Something was wrong. Whatever was growing was on her chest and her neck, and the…
December and January can be busy months with all the running around and family activities. Before your calendar fills up with holiday happenings, the Familial Hypercholesterolemia Foundation (FHF) wants you…
In celebration of her final 18th round of chemo, a brave 12-year-old girl was given a guard of honor march along the halls of the hospital. Her name is Alice…
A mutant zebrafish that came into scientist's cross hairs over 20 years ago, has similar symptoms as patients who suffer from nemaline myopathy. This highly rare genetic muscle disorder is…
Kathy Dzembo felt hopeless with her great-nephew's rare disease so she did what she does best: bake. Connor's scary diagnosis was that of a neurodegenerative disorder called ataxia-telangiectasia, an autosomal…
Shanice Rowe, a mother in Jamaica, was never expecting her baby boy to fall victim to an almost unheard of disease. Now she's struggling financially to keep her boy alive.…
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