Share your rare

In rare disease diagnosis, data can make all the difference. By telling us some details of your diagnostic journey, you could help shorten the path to diagnosis for someone just like you.

First name*

last name (we will not be sharing with your story)*

Email*

years to get my diagnosis*

On my journey to a diagnosis, I had:

select all that apply by choosing years

Symptoms

Visits to the Emergency Room

Nights in the hospital

Surgeries

Misdiagnoses

Medical complications

Failed treatments

Tell us about your journey to diagnosis and whether there was a specific piece of information or data that helped you reach it:

0 CHARACTERS (MAXIMUM 750 CHARACTERS)

What did it mean to you when you finally were given a name for your disease?*

0 CHARACTERS (MAXIMUM 1400 CHARACTERS)

If we are able to use your story, and you have the option to include your picture

Upload a <2mb image (JPG, PNG)

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I am 18+*

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