Recent Posts

Page 1 of 38

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

January 15, 2018 10:40 pm


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...

Continue Reading

RARE Carousel of Possible Dreams! Help Us Fundraise!

January 15, 2018 12:30 am


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...

Continue Reading

2018 Utah Rare: RARE ANGELS Tribute

January 11, 2018 12:06 am


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...

Continue Reading

Register now for our 4th Annual Utah Rare Symposium

January 10, 2018 11:44 pm


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...

Continue Reading

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

January 6, 2018 10:08 pm


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...

Continue Reading

Wishing you a Safe and Healthy 2018!

December 31, 2017 11:22 pm


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...

Continue Reading

“Sweet Surprises” by Kathleen Ann

December 2, 2017 12:49 am


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...

Continue Reading

National Ability Center: Saluting Our Heroes

November 15, 2017 11:46 pm


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...

Continue Reading

Rare Disease Congressional Caucus Briefing November 15th

November 14, 2017 7:50 pm


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...

Continue Reading

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

November 14, 2017 4:07 am


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...

Continue Reading