Profiles

Diaries of the Rare & Undiagnosed.

Experience our battles. Feel our strength.

Meet a few of the RUN family members whose daily life is unlike anything most will ever endure. See what's it is like to be among the 1 in 10 living with a rare or undiagnosed condition in the U.S – and how much of an inspiration they are to our global community. Pledge to RUN and submit your story to be shared with the community.
Ava Szajnuk

August 17, 2014 12:33 am

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Born: June 4, 2006 Saved on June 15, 2013 Saved again on June 26, 2013 Saved again on July 3, 2013 Saved again on July 12, 2013 Ava...

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Oskar Szajnuk

August 17, 2014 12:32 am

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2013: Oskar Szajnuk was diagnosed at the age of four with an unknown genetic dysfunction, an autonomic neuropathy, small fiber polyneuropathy. He is extremely low in ferritins, which...

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Lucy Szajnuk

August 17, 2014 12:31 am

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Lucy Szajnuk has an undiagnosed genetic dysfunction, autonomic neuropathy, small fiber poyneuropathy.  She is extremely low in iron. Her ferritin levels are extremely low. She has restless leg...

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Asia

August 4, 2014 2:08 pm

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Asia-Age 7 Diagnosis-2q23.1 – Microdeletion Syndrome Asia has 2q23.1 Microdeletion Syndrome. She was diagnosed winter of 2013 at the age of 6. She has a deleted portion of...

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