When Jon Miller, president and founder of the Network of Tyrosinemia Advocates (NOTA), learned of a family in Puerto Rico who had moved to Connecticut to get treatment for their…
Are you an adult with isolated cervical dystonia? Wake Forest (Winston Salem, NC) is running a clinical trial of a new botulinum toxin. For more information click here. Or contact:…
Mi nombre es Bonnie y he estado luchando por mi vida durante dieciocho años, pero he estado luchando una batalla invisible durante los últimos doce. Esta es la historia #myinvisiblefight…
Super Bowl 50 is this Sunday! In case you live in a box, the Super Bowl is kind of a big deal. And why shouldn't it be? You take the…
When 63-year-old Donald Castner of Napa Valley, California was diagnosed with idiopathic pulmonary fibrosis, or IPF, it came as a complete surprise. After all, he'd been active and in good health…
To read part 1 of Lisa's post, click here. These are some of my favorite online support for just about anything you need: Have a basic question? These forums are…
Mi nombre es Bonnie y he estado luchando por mi vida durante dieciocho años, pero he estado luchando una batalla invisible durante los últimos doce. Esta es #myinvisiblefight. En 2002, colgué…
You made it! It's the end of the week and time for yet another Editor's Choice post. What do heart failure and narcolepsy have in common? Do you have a…
If you have a diagnosis of Myasthenia Gravis like me, here are a few things you probably already know: 1. They call us Snowflakes because none of our symptoms are…
I’m sure you’ve heard that old saying; a picture is worth a thousand words? It’s kind of a cliché. It’s also kind of wrong. Some pictures are worth far, far,…
We’ve told you before how pharmaceutical companies can be a good source for free disease education online. Because of the way pharma companies have to vet all their materials to…
Mi nombre es Lisa. Soy sobreviviente luchadora del cáncer 3 veces, y estoy viviendo con la enfermedad autoinmune rara Miastenia Gravis. Soy una madre, una esposa y un Consultor Integral…
Soy Carla Fairchild. Tengo cuarenta y siete años, y la familia y la moda decir todo para mí; son yo. Ambos son mi amor, mi vida y mi pasión. Ser…
"Sticks and stones may break my bones But words will never hurt me" Despite the fact that most of us grew up reciting this old adage, by the time we're adults…
Fact: I donated blood before I knew I had Lyme disease, possibly contaminating whoever recieved my donation. I immediately felt guilty once I learned of my diagnosis, even though I had…
2016 Acromegaly Community Bi-annual Meeting, April 29-May 1st Mark your calendars, reserve your hotel room and put a price alert on Kayak.com to attend the Bi-Annual conference of the Acromegaly Community.…
Last year, the FDA approved a record number of new drugs to treat rare diseases, according to the National Organization for Rare Disorders (NORD). In all, 21 "orphan" drugs were…
Soy Caroline McCarry. Soy una hija y un amigo; una hermana y un primo; un panadero y un escritor; una animadora y una persona que ha sufrido de TOC y…
At the age of 10, Cassie Barnby began educating medical students about a rare disorder called tyrosinemia which affects only 1 in 120,000 people. Now 17, and a senior in high school,…
Seventeen-year-old, Brooke, diagnosed with cystic fibrosis (CF), had only one wish. Inspired by Kevin Durant and his Aunt Pearl shoes designed for cancer awareness, Brooke told the Make-A-Foundation she wanted…
Hace 13 años, después de haber sido diagnosticado con una enfermedad crónica, Lisa Copen no podía dormir. Ella estaba tratando de encontrar la manera de manejar su nueva normalidad. Ella…
What strikes me about artist, David Mortimer's, exhibition is his use of "glitter." "[Glitter] is a symbol of my life in a way. It's about trying to cover up, glamorize,…
Rare Disease Day 2016 is almost upon us! Rare Disease Day is an international movement organized by Eurordis and supported by 41 Official Global Partners. Whether official or not- Patient Worthy…
Nancy is a breast cancer patient and these are five lessons she's learned throughout her treatment, applicable to anyone who has faced the adversity of being a patient: Attitude of gratitude.…
CYSTIC FIBROSIS PATIENTS VOTE FOR ALTERNATIVES TO TRADITIONAL TREATMENT CysticLife partners with researchers at Mayo Clinic to study if exercise can replace therapy 1x per day Phoenix, AZ: Fed…
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