Recent Posts

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RUN’s NBA Initiative: NBA Teams Hosted Rare and Undiagnosed Families!

January 15, 2018 10:40 pm

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RUN’s NBA Initiative grew in 2017! NBA teams: the Milwaukee Bucks, the Utah Jazz, the Phoenix Suns, the Washington Wizards and the Boston Celtics all hosted rare and undiagnosed families in 2017! We will continue...

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RARE Carousel of Possible Dreams! Help Us Fundraise!

January 15, 2018 12:30 am

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Please consider joining our team and help us power up our fundraising efforts!   Dear Friends and Family, The Rare and Undiagnosed Network (RUN) is participating in the...

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2018 Utah Rare: RARE ANGELS Tribute

January 11, 2018 12:06 am

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We are creating a RARE ANGELS Tribute for our upcoming Utah Rare event on March 3rd. If you have a RARE ANGEL in your family or know of someone...

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Register now for our 4th Annual Utah Rare Symposium

January 10, 2018 11:44 pm

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Registration for the 2018 Utah Rare Symposium is now OPEN! Please share with your rare friends and rare disease community! We have a great day planned and are...

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Mother Trying to Raise Awareness of Rare Genetic Disease Linked to Autism

January 6, 2018 10:08 pm

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My name is Sandra Sermone and I spent 6 long years trying to get my son diagnosed.  During those years he endured multiple operations, hundreds (no lie) hospitalizations, and countless...

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Wishing you a Safe and Healthy 2018!

December 31, 2017 11:22 pm

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As 2017 comes to an end, we want to wish you all a safe and healthy 2018!  Thank you to all of our RUN families for continuing to...

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“Sweet Surprises” by Kathleen Ann

December 2, 2017 12:49 am

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Each day, we have a new chance to rewrite our day from the learned experiences before. We have the chance to pick out what clothes we are going...

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National Ability Center: Saluting Our Heroes

November 15, 2017 11:46 pm

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Thank you to the National Ability Center (NAC) for including RUN at your Saluting Our Heroes luncheon. It is always such an honor to be a part of the...

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Rare Disease Congressional Caucus Briefing November 15th

November 14, 2017 7:50 pm

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RUN is a proud partner of the Rare Disease Congressional Caucus An accurate diagnosis is usually the first step in developing a treatment plan for a patient, but it...

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The Rarest of the Rare: Our Miracle Boy by Stefanie B.

November 14, 2017 4:07 am

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Mothers should always be given credit for knowing their children. Find practitioners who will listen to you and care more about what you know than what they know. I started this blog to...

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