Raptor Pharmaceuticals, the makers of the cystinosis-treating medication known as PROCYSBI®, go above and beyond for the people they serve. If you have a child with cystinosis (or any chronic disease…
If you’re one of the people in the United States diagnosed with Behcet’s Disease, the odds are extremely high you’re the only person living with that disease in your city,…
My journey with my 24 yr old daughter's illness began about two years ago. She was living away from home when her symptoms began. She wasn't able to continue to…
Rare conditions are difficult on so many different levels. It’s hard to find someone who can relate, to find a physician who is familiar with the treatment options, and to…
Dutch-American Reality TV star Yolanda Hadid, who is widely known for her supporting role on The Real Housewives of Beverly Hills, announced in the fall of 2015 that she was diagnosed…
When you have a rare disease, your money goes to a lot of different things that people without health problems don't have to cover. Like medicine. Or therapy. Or hospitalizations. Or...…
Let's be real... it personally offends me that Raptor Pharmaceuticals' logo isn't a velociraptor. Like, that is a missed golden opportunity. I'm just saying... there are a lot of drugs out…
What are parents’ hopes for their children? Typically a happy, successful and long life. Children are often asked what they want to be when they grow up... but the growing…
The Immune Deficiency Foundation (IDF) is a fabulous resource for anyone living with primary immunodeficiencies (PI). On May 12 at 8 PM Eastern Time, the IDF will host an informative…
When my daughter was born on August 8, 2012 I became a rare mom. I wouldn't know I was until 15 months later, but my little girl was born with a…
Conan O'Brien is just a big a Walking Dead fan as I am. If you're fan of the show as well, you know they are in the back woods of…
Little Miss Positive, Georgina Compton, is making the most of her second chance at life. Last year Georgina (George) Compton faced the very real prospect of dying at the age…
Es fácil para los jovenes de 20 años de edad bendecidos con cuerpos perfectos para aplicar fácilmente todas las posiciones sexuales locas y acrobáticas que Cosmopolitan te da. Sí colgando…
Sometimes, you just gotta be an unstoppable force... What do you do when you’ve been diagnosed with a disease like Behcet’s, something so rare that information and resources about it…
Happy Almost Mother's Day Patient Worthians! This week is PACKED with announcements. First of all, it's Lyme disease Awareness Month, Cystinosis Awareness Month, Cystic Fibrosis Awareness Month, and Behcet's Awareness…
Continuing medical education courses (or CMEs) are educational events designed to keep medical professionals up to date on the latest information in their fields. These professionals earn credits toward their ongoing…
There are treatments out there to help manage living with Myasthenia Gravis (MG). Whether your infant was born with Congential Myasthenia Gravis or you are an adult who showed a positive result…
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