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Rare Disease Day 2019

Friday, February 1, 2019 - Thursday, February 28, 2019
Anywhere 1 Anywhere Way Any CityMD  20902
Friday, February 1, 2019 - Thursday, February 28, 2019
Anywhere 1 Anywhere Way Any CityMD  20902

About This Activity

We've had an overwhelming response this year and we've sold out of our medals on hand.  We are partnering with several teams though and have createda back order registration category.  These people will receive the same medal as the other categories.  The just won't receive them until April.  Everyone who orders using the back order categories through February 28th will be guaranteed a medal.

Join us for the 4th annual Rare Disease Day virtual race sponsored by Running On Air and benefiting the National Organization for Rare Diseases (NORD) and the PCD Foundation.   Participants receive a medal of a zebra. Some of the zebra stripes are DNA strands.  The black outline of the zebra including the stripes are glitter.  The blue sky is like stained glass.  The green grass is also glitter.

Why a zebra?  “When you hear the sound of hooves, think horses, not zebras.”  In medicine the term “zebra” is used in reference to a rare disease or condition.  Doctors are taught to assume that the simplest explanation is usually correct.  Unfortunately that means those with rare diseases are often misdiagnosed or go for years without a diagnosis.

 

Every registration will also get a bib number specifically designed for this event.

Share your event pictures and event details on https://www.facebook.com/RunningOnAirO2/ and use #RareDiseaseDay. We'll share to inspire others to make a difference and have fun in the process.

There are nearly 7000 rare diseases.  A disease is considered rare in the US when there are less than 200,000 people with a diagnosis.  Your participation in this event will help to make a difference for the more than 25 million Americans living with a rare disease.

You can choose how far you want to walk or run to complete this event, whether it’s a 5K, 10K or a half marathon.

This event is organized by Running On Air, which is not affiliated with NORD or the PCD Foundation. A portion of the profits from this event will go to NORD and the PCD Foundation. All fundraising money goes directly to the charity selected.

Event details and schedule

As a virtual event, you can complete this race anytime in February.  The distance is your choice.

Medals will start shipping in February.  Medals ordered under the back order categories should ship around mid-April.

One of Running On Air's missions is to raise awareness of rare diseases.  The founder, Mary Kitlowski, and her sister, both have a rare disease called Primary Ciliary Dyskinesia (PCD).  There are less than 2000 people diagnosed with PCD in North America, although it is estimated that around 25,000 people in the US may have the disease.

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

The PCD Foundation is a patient-focused organization, whose mission is to provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health and, ultimately, a cure for primary ciliary dyskinesia

Like and follow Running On Air on Facebook, Twitter (Mary_RunOnAir) and Instagram (RunningOnO2) to keep up with the latest news on upcoming virtual races.

Organizer Info

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