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…
Dolor colosal. Hinchazón gigantesca. Hipersensibilidad. Los cambios drásticos en la temperatura corporal. Imagínese estar en ese tipo de dolor todo el tiempo. Francamente, suena un poco como una pesadilla. Bueno,…
Eurodis' Rare Disease Day is only a month away! The beauty of this honorable day isn't simply due to the cool events, the social outpouring, or the amazing spreading of awareness…
Thanks to a bad band's 1984 contribution to "culture," everyone’s got a sarcastic “I’m a big deal in Japan” T-shirt. But for once, a blog is writing that phrase without…
In July of 2013, I ended up in the emergency department of the hospital in Minnesota where I worked 20 years prior because my shunt suddenly went into failure while…
Welcome to the Editor's picks for this week! This week got a little crazy, but that's how we like it. What do you think about medical marijuana? Do you watch MasterChef?…
How many times can we whisper to ourselves "If only..." before we finally change the past? The answer is infinity. Infinity times. Because you can't change the past. Duh. As of right now,…
An article posted on the Cystic Fibrosis News Today site, piqued my interest about what’s happening in the world of cystic fibrosis, or CF, lung transplantation these days. According to the Cystic…
Obtener un diagnóstico de cualquier tipo es aterrador. Conseguir un diagnóstico de una rara enfermedad autoinmune, que amenaza la vida que usted nunca ha oído hablar de es aterrador. Pero…
You want to know what the most popular position in bed is? Scroll down below to check out Lisa's most recent blog post to find out. For all of our…
Síndrome de dolor central es una enfermedad neurológica de toda la vida del sistema nervioso central, lo que provoca constantes, sin fin, señales de dolor agonizante de todos los tipos…
Living with dystonia is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was king of Ephyra who was punished for chronic deceitfulness and condemned…
If you are a parent of a chronically ill child, there are a million things running through your head every single day—day in—and day out. Enter the parents of a…
El angioedema hereditario puede ser una enfermedad rara que califica para el estatus de medicamento "huérfano", pero estamos lejos de estar solo. Hay organizaciones de AEH y las instalaciones de…
You can read all the books, write all the articles, and study all the patients, but one thing will always separate someone without a rare disease from someone with a…
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