If You Have a Rare Disease You Should Tell Me About It!

 

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I need to know these things.

Well, I want to know these things.

Meeting and listening to the stories of rare disease patients is my job, but more importantly it’s my passion and the fact that I get to help patients share their stories as my job is just…awesome.

So here’s how it works:

1) Figure out if you have a rare disease. Here’s the giant ass list of rare diseases. Even though there are a lot of chronic diseases, only a few are considered “rare” by the official number of patients they affect. CHECK ZE LIST.

2) Get it together:  I love to hear your story in full. When did your symptoms first begin? At birth? Later on in life? How did your symptoms affect your every-day life? What sort of doctors did you see? What sort of exams did you have? How and when were you diagnosed—and with what? Is there a treatment or cure for your condition? Have you gone through any therapies or clinical trials? What is the outlook for the future? And lastly—what sort of advice do you have for other patients who may be going through a similar diagnostic journey?

3) Fill out the form. Do not worry. This is not a giant black hole. It goes directly to my work email. It also becomes a new draft in the website and it stores all the pictures you’ve included.

4) You’ll get an email back. It will confirm that I got your story.

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5) Totally comment here though and let me know you submitted it so I can keep an eye out!

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6) Check out the RARE Daily to see if your story has been posted!

 

So…

 

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