Undiagnosed Day is April 29th! Join Us to Honor the Undiagnosed Rare Disease Community

April 29, 2017

An undiagnosed disease is a medical condition without a known cause despite a lot of evaluation.” Undiagnosed Disease Network UDN

What is Undiagnosed Day?

Undiagnosed Day is celebrated on several different days around the world but every day is Undiagnosed. RUN celebrates Undiagnosed Day on April 29th.  The main objective of Undiagnosed Day is to raise awareness for the undiagnosed rare disease community among the general public and decision-makers about undiagnosed rare diseases and their emotional, physical and financial impact on the lives of the patients and their families.

The campaign targets primarily the general public and also seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in undiagnosed rare diseases and the world of genetics. Since 80% of rare and undiagnosed rare diseases have identified genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed rare disease patients.

Help us raise awareness for the undiagnosed rare disease community by supporting Undiagnosed Day on April 29, 2017. Please use #UndiagnosedDay in all of your social media!

We created the Undiagnosed ribbon from Ava Szajnuk’s drawing.  Ava is nine years old and is  Undiagnosed. Since zebras represent the rare community, we envisioned having a zebra ribbon with baby blue and baby pink colors added to it.  

I encourage you to explore our Rare and Undiagnosed Network (RUN) website to learn more about many families living in a diagnostic odyssey and the world of the unknown. Please read some of the incredible stories of inspirational men, woman and children living with an undiagnosed rare disease.

Ava Szajnuk (9 yrs old), Undiagnosed

Hailey Sampsel (16 yrs old), Undiagnosed Migraines

Rachel Nielsen (17 yrs old), Undiagnosed/Eosinophilic Esophagitis/Colitis

Calen Forsythe (16 yrs old), Undiagnosed

Michael Lee (14 yrs old), Undiagnosed

Lashay (16 years old), Undiagnosed

Michael George (15 yrs old), Undiagnosed

Oskar Szajnuk (7 yrs old), Undiagnosed

Lucy Szajnuk (5 yrs old), Undiagnosed

Stockton Perry (2 years old), Undiagnosed

Cohen Bramlee (4 years old), Undiagnosed

Talan Summers (26 years old), Undiagnosed

Kathleen Ann (28 years old), Undiagnosed

Brittany Stangley (24 years old), Undiagnosed

Grayson McClure (24 years old), Undiagnosed

Each one of these families has an incredible story to share about their faith, their pain and their perseverance. Unfortunately, there are literally millions of stories to share…

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