According to a recent article, last week was Porphyria Awareness Week, a week dedicated to recognizing and uniting those who are a part of the porphyria community. Porphyria Porphyria is…
April 15th is International Pompe Disease Day! The International Pompe Association (IPA) is an organization of Pompe disease patient groups that seeks to coordinate activities and share experiences worldwide. The…
It feels good to rally together for a good cause, doesn't it? That must be the case for this Cedar Valley, Iowa community who answered the call when the mother…
For so many in the rare disease community, courage isn't a just a virtue - it's a necessity. Many have to overcome odds and obstacles that most others don't have…
What can one little boy and his family do to fight a rapidly debilitating and (currently) incurable disease such as Duchenne muscular dystrophy? A lot. The diagnosis of a loved…
El ha sido presentado en el National Geographic Channel. Le ha dado la mano al presidente Obama. Ha sido detenido por el servicio secreto. Incluso después de todo eso, Jason Dunn sigue…
El hecho de que Halloween ha pasado no significa hemos terminado de hablar de la cirugía cerebral. Specifically, deep brain stimulation therapy. No, esto no es algo así como el…
Usted no va a venir a través de demasiadas personas en sus vidas como Elaine Gómez y su hija, Michelle DeMont. Y es probable que no se encontrará con el…
Parado frente a una multitud de gente hablando sobre su HFHo puede ser intimidante. Imagina que esa multitud fuese un panel de doctores y científicos que son parte de la…
He’s been featured on the National Geographic Channel. He’s shaken hands with President Obama. He’s been stopped by the secret service. Even after all of that, Jason Dunn keeps going, and he’s taking his dystonia with…
Just because Halloween has passed doesn't mean we're done talking about brain surgery. Specifically, deep brain stimulation therapy. No, this isn't something like Frankenstein's monster. Deep brain stimulation therapy is…
You won’t come across too many people in your lifetimes like Elaine Gomez and her daughter, Michelle DeMont. And you probably won’t come across anyone who has died, or nearly…
A 3-year-old boy is dead. His 5-year-old sister was seriously injured. His mother had minor injuries. On a actually pleasant Saturday morning in Buffalo, NY,the Buffalo News reports a horrific accident occurred at…
Standing in front of a crowd and talking about your HoFH can be intimidating. Imagine if that crowd was a panel of doctors and scientists with the US Food and…
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