Searching for a Future for Babies with Hunter Syndrome
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…
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…
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…
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…
Living with a chronic health condition that dramatically alters one’s life can be very confusing, scary, and lonely. I lived in this mental misery for years when I developed dystonia,…
Michael J. Fox was the known for years as the teenage financial wizard on the television series, Family Ties. Later he went on to become a time traveling teen in…
This article is the first in a series written by Carolina, Mariana's mother. Carolina hopes that sharing their story will increase awareness. Ever since Mariana was born, her life has…
The steely visage of our seventh president Andrew Jackson will disappear from the face of the $20 bill. Yes, “Old Hickory” has been fired from top billing on the venerable $20 note…
My name is Rob. I’m originally from Miami, Florida, born and raised, moved out of there back in 1981 and joined the Navy; spent 20 years on active duty. Transitioned to…
As you know, May is Lyme Disease Awareness Month and we encourage you to participate! One of my favorite ways to get involved is doing the Lyme Disease Challenge. I took…
Psiquiatra Dr. Jennifer Pate, de 47 años, recibe infusiones intravenosas de inmunoglobulina que salvan vidas cada tres semanas. Esto no es por elección, porque sin ellos, su sistema inmunológico está…