Never Thought I’d Become a Marathoner, But Here I Am

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Hey all! First of all, thank you for taking the time to give me a few minutes of your time to discuss my marathon training and my Community Partner, Tara Notrica. My name is Kaitlin Bartlett, I’m 29 years old

Posted in Running Stories, Uncategorized Tagged with: , , , , , , , , ,

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

Life is More than just a Marathon

A lot of us in the Rare Disease world refer to the ups and downs of the diagnosis (or hunt for a diagnosis) as being a marathon. This weekend, I discovered that our life is far more than just a

Posted in Uncategorized

RACE COMPLETED

The 2016 Boston Marathon was pure misery: My feet hurt, my knees hurt, and with the gels I was taking during the run, my reflux was acting up, so my chest hurt and I felt nauseated for almost the entire

Posted in Uncategorized

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

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Boston Marathon

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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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