Petition for a Course in Rare Diseases

This is very much needed

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Diagnosed with cadasil at 20!

I have dercums as well as several other rare and chronic health conditions. My quality of life has been greatly compromised and finding a health care professional that understands even half of whats going on with me seems almost hopeless, especially where i live!

I have Ehlers Danlos syndrome with other rareand the care

We matter, we suffer

I have both Durcums Disease Fibromyalgia and CFS would help if more people understood.

I have Dercum's Disease. It is an extremely rare disease. When I was diagnosed my doctor said that it wasn't taught in medical school because it was so rare. They reserve it for specialist. I believe that if it was taught to new doctors I wouldn't have had to suffer as long as I did before I got an accurate diagnosis. Because they don't teach it in Med school I've had to educate many of my doctors. I don't believe that it is the patients job to teach the doctors about these diseases.

The rare disease, Langerhans Cell Histiocytosis (LCH), took the life of my son, Samuel, when he was two years old.

Phelan-McDermid Syndrome

for my loved ones who struggle with this disease...

I've have cadasil been diagnosed since 2004

My mother was diagnosed with Cadasil in 2007. Every doctor I have seen who has asked about my family medical history has never even heard of it. People need to be educated!

Please find a cure

A truly importante and worry cause

I have seen what this disease does to loved ones.

let's get this going.

So sorry for your loss...we need to get the education about this public! My prayers for you and yours...

Cadasil diagnosed 2014

My brother, Steve, 57, just died from Cadasil. He was misdiagnosed with MS for many years