Why is there a growing trend of adults receiving care from pediatric doctors? Meet Rachael Goldring. She is a vibrant 24-year-old who has just spent her first year since birth…
According to a press release on Newswise, there's a one-two punch that could save the lives of thousands of people living with drug resistant rare cancers. Researchers at UC San Diego…
An exciting new development came out of presentations at the European Society of Cardiology conference in Spain this past weekend. We often hear about how previously approved FDA drugs for more…
When I was a kid, my parents had one TV. It was a 19" black and white set with a rabbit ear antenna that only picked up two networks (when…
Adrenoleukodystrophy (ALD) is a genetic disorder that is very rare and usually occurs in childhood. People with ALD have two options for treatment, both of them less than favorable and…
We have reported a lot on the amazing possibilities that stem cell treatment offer the rare disease community. But something we assume, though we don't hear much about, is that…
This month, Soliris®, a treatment produced by Alexion Pharmaceuticals, Inc. was approved by the European Commission for the treatment of Refractory Generalized Myasthenia Gravis (gMG). Myasthenia gravis (MG) is a…
Happy Back-to-School Week Patient Worthians! If you're going back to school or your children are going back to school, we know it's a hectic and fun time of year. So…
Britain may be making its Brexit, but people with rare diseases may want to keep a close eye on the European Union (EU) and its newly formed European Reference Networks (ERNs).…
In my home, everything is shared with our dogs. When eggs are made for breakfast, the dog’s eggs are served scrambled. When it’s time to exercise, we all head outside…
Loooong before myasthenia gravis (MG) came into the picture, Cathie’s mom used to joke that Cathie must be part fish. She was always in the water. It started with swimming…
According to an online article from PRI, there is a terrible injustice being meted out to people with albinism in Tanzania. Upon birth, their limbs have price tags on them,…
When I was in second grade, a boy named George accidentally ate a peanut M&M and turned bright red. We thought he was choking. This was in the 1975, when…
Growth spurts? As an overachieving parent, I couldn’t get enough of them. I was the kind of mom who wanted to remember each and every step toward adulthood. I didn’t…
Damien took a lot of naps. I mean, a lot! It’s true; he was a very active Doberman Pinscher. He fetched everything—tennis balls, Frisbees, shoes that hadn't been put away—you…
The Familial Hypercholesterolemia Foundation's main mission is to raise awareness of familial hypercholesterolemia (FH) to the public. As part of this goal, the FH Foundation annually hosts Familial Hypercholesterolemia Awareness…
One of my favorite places to visit is Savannah, Georgia. And what better reason to visit than an spinal muscular atrophy (SMA) charity event? Who: SMA Angels What: SMA Angels Charity Ball…
Sad news today as the world mourns comedian and Muscular Dystrophy Advocate Jerry Lewis' death. The director/producer died at the age of 91. Jerry Lewis was a 1960's movie star…
Most kids love robots. So the idea that a kid with cerebral palsy (CP) could improve the way he or she walks with the help of a robot is just…
If you’re anything like me, you probably don’t remember much about the work you did 20 years ago. And unless you’re a pack rat, chances are you can’t even lay…
As a child of the 70s and 80s, I’ve lived long enough to see my geeky obsessions burst out of the shadows into mainstream pop culture and profitability. Take comic…
Happy Friday! This week, we have an inspiring story about a woman who is battling cystic fibrosis but she's river dancing her way through it! We also have some news…
The concept of “race” occupies a perilous crossroads at this moment in American history. Some would argue that we live in a “post-racial” world since the election and re-election of…
Whenever it comes to a controversial issue, I always ask myself: Who benefits? In most cases, it’s not all that hard to figure it out. But sometimes, it seems like…
Gene therapy is rapidly shaping up to be the next stage in the evolution of treatment for a wide array of conditions. And it makes sense: rather than treat the…
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