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…
I am a Rare Mom! I love that term, because it covers so many different parts of my life. I’m unique, an individual, a working mom, and I’m also a…
Strapped for cash after a cystinosis diagnosis? Listen to this! There is a scholarship available to lighten the load of families who are dealing with the challenges that accompany cystinosis.…
El 7 de junio de 2015, miles de personas salieron a las calles a través de Canadá en el Paseo anual para poner fin a la artritis. Una causa principal…
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