The State of Utah will be the first in the history of the United States to declare April 29th as Undiagnosed Day. Currently, the Undiagnosed community falls under the umbrella of the Rare community and Rare Disease Day, on the last day of February. We had a very successful Utah Rare Disease Day this year and we were very thankful to the Governor for declaring February 29th as Rare Disease Day in Utah. However, as a mother of three Undiagnosed children and Undiagnosed myself, the Rare and Undiagnosed Network felt that it was very important to raise awareness for all of the Undiagnosed patients currently living in the world of the unknown and in a Diagnostic Odyssey.  #UndiagnosedDay

There are no current figures for the Undiagnosed community. Wikipedia does not even have a page for Undiagnosed Diseases, “The page “Undiagnosed Disease” does not exist.”  We have since started one on Wikipedia for Undiagnosed Diseases.

What does it really mean to be “Undiagnosed?”

To be undiagnosed is like being a child without a “home”.

Not a home in the physical sense, but in the sense of feeling you are without that one place in the world that provides the most comfort. The place that protects you from outside threats, keeps you warm inside, and gives you that safe, confident feeling you have when knowing all of your surroundings.

Millions of children and adults have what is called an “undiagnosed disease”, which is a “medical condition without a known cause despite great effort to research, discover, and identify the cause through extensive evaluation.”

Our children and loved ones deserve better. No child should be left undiagnosed and have to live without feeling comfortable, safe, and confident in knowing their surroundings inside and out. Every child and loved one not only deserves a diagnosis, but they need it – and time is of the essence.

So when someone asks you what “Undiagnosed” means, you can tell them to think about life without a home. Life without full comfort, full warmth, and full confidence in your surroundings.

Living “undiagnosed” is nothing more than living the unknown.

What is Undiagnosed Day?

Undiagnosed Day is a special day where you can help make millions of children and adults as well as their loved ones living undiagnosed feel a great sense of comfort and confidence in knowing they are not alone in their search for answers.

Undiagnosed day takes place on the last Friday of April each year with a single objective:

raise awareness among the general public and decision-makers about undiagnosed 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 diseases and genetics.

Since 80% of rare and undiagnosed diseases have identified genetic origins, it is imperative to raise awareness for the importance of genetics in the diagnostic odyssey of undiagnosed patients.

About the Undiagnosed Ribbon:

Undiagnosed ribbon was created by Ava Szajnuk.  Ava is eight years old and Undiagnosed. Since zebras represent the Rare community, we envisioned having a zebra ribbon with baby blue and baby pink colors added to it.  We continue to be a part of the Rare community but we also stand alone. All rare diseases were once Undiagnosed.

Help us raise awareness for Undiagnosed Day on April 29, 2016. #UndiagnosedDay is the official hashtag. For more information and stories about our Undiagnosed families visit RUN’s Blogs.

Thank you for your continued support of the Undiagnosed community.

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