Today is Undiagnosed Day! Join Us to Honor the Undiagnosed Rare Disease Community

 All rare diseases were once Undiagnosed. 

What does “Undiagnosed” mean?

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 for the families living in the world of the unknown. 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!

If you would like to join our Undiagnosed Alliance  please reach out.

Please feel free to use our social media banner, our poster and our video!

We want collaboration, collaboration, collaboration!

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…

If you would like to request a declaration from your Governor next year, please feel free to use the language below to apply for one:

Whereas, an undiagnosed rare disease is defined in the United States as a disorder that affects fewer than 200,000 Americans at any given time;

Whereas, approximately 50 percent of patients suffering from an undiagnosed and rare disease are children under the age of 18;

Whereas, undiagnosed rare disease patients should be recognized as a distinctive population that faces unique and troubling circumstances;

Whereas, patients’ quality of life is affected negatively by the lack of complete health and social care pathways prior to the issuance of a diagnosis;

Whereas, through promoting this issue we hope to achieve greater awareness, knowledge, and information sharing ao as to achieve a great likelihood of accurately and effectively diagnosis presently rare and undiagnosed diseases; and,

Whereas, we wish to lend support to the estimated (add number of residents living in your state) (enter state) residents who live with an undiagnosed and rare disease and their families, as well as to organizations and individuals who work tirelessly in our state to provide further education and research about undiagnosed and rare diseases;

Now, therefore, I, (Governor’s name), governor of the State of (enter state), do hereby declare April 29, 2017, as

Undiagnosed Rare Disease Day in UtahUndiagnosed Day in Washington

Undiagnosed Disease Awareness Day in Wisconsin

If you receive a declaration from your governor, please share it with us!

Thank you for your continued support of the entire undiagnosed rare disease community!

Gina Szajnuk
RUN Co-founder and Executive Director
P (310) 883-4353

Comments (1)

  1. Penny Crittenden Reply

    April 22, 2017 at 3:18 pm

    My son, Benji, is undiagnosed. He was not expected to live past one and is 15, but has really declined this year and we are working hard to keep him off Hospice. His geneticist jokes that she no longer considers him a zebra, but a unicorn!

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