Blog Archives

Introducing the Community Partner Committee

Did you know that Running for Rare has a Community Partner Committee? Our main objective is to support healthy and safe community partnerships for the Running for Rare team. We develop strategies to grow the community and work to ensure

Posted in Patient Stories

Big City Hope

With the New York City Marathon less than two weeks to go, I wanted to share why the Big Apple is such a magic location on my family’s journey with a rare disease. Earlier this year, I had an opportunity to speak on the

Posted in Patient Stories, Running Stories

CHI x 2, Wally, Winning The Lottery Again, A 4th Son and The Pinnie

Our recent Providence Running For Rare weekend evoked many emotions, but we think happiness and gratitude top them all. We are so happy to have had the opportunity to be part of this amazing group, and we are grateful for

Posted in Patient Stories

Amelia’s Providence Experience

My name is Karen.  My daughter Amelia participated as a RARE Community Partner as part of the Providence Half Marathon/Marathon weekend.  Her running partner is Phil. Amelia has a rare medical diagnosis called Congenital Hyperinsulinism (HI); only 1 in 50,000

Posted in Patient Stories

A Newbie’s view

As a first time patient partner I was not sure what to expect but after getting to know my running partner Sophie Hu this past few months, it has turned out to be a wonderfully positive experience for me. After 2

Posted in Patient Stories

It All Came Together…

On April 16, 2016, the Running4Rare team came together for the first time as an independent entity working with the National Organization for Rare Disorders (NORD) and the Undiagnosed Diseases Network (UDN).  It was a very special evening for all

Posted in Patient Stories, Running Stories

RUNning for Rare Zebras!

For the past two years I have been partnered with Emma, a member of the Gaucher community for the Running for Rare team. This year I am very excited to be partnered with the Szajnuk family, who represent the undiagnosed

Posted in Patient Stories

RARE Community Partner Continues Her Fight

Tara is a RARE Community Partner  for the third year with runner, Nick Thurlow, and is representing the Mast Cell disease community. She has been a wonderful member of our team for 3 years and we would like to share her

Posted in Patient Stories Tagged with: , , , ,

Season of Change

I walked past my bedroom wall some days ago, a wall that has the poster from 2yrs ago of Jessi (my 1st runner), myself, and sweet Ben whom also had a form of my MPS and whose family I hold

Posted in Patient Stories

Will Run for Coffee

By Jen Melanson with Emma Rooney I am very excited to, once again, be part of the Running for Rare Team, this year as a runner. I’m training to take part in the Providence Half Marathon which is less than

Posted in Patient Stories, Running Stories

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Welcome to Running for Rare Diseases

Marathon runners dedicated to making a positive impact on the lives of people with serious diseases have teamed up with NORD to make a difference. Click here for more info.

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