Blog Archives

The Blog Returns!

After the original running4rare.org site was migrated to NORD’s runningforrare.org, the site was redesigned and didn’t reincorporate the fully history of the blog the original Sanofi-Genzyme running team blog content, which includes lots of heartfelt memories and thoughts by the

Posted in Uncategorized

Rare Disease Day Relay 2014

Back on February 29th, 2012, I was in Allston for a meeting and brought along my camera along to try to snap a few shots of the employees running the final leg of the inaugural Rare Disease Day Relay from

Posted in Running Stories

Marathon Update

A belated note to the blog to let you know that all the team runners and patient families are safe. Each of us was overwhelmed when we returned home by the concerned calls and messages reaching out to us from

Posted in Uncategorized

Follow the Runners on Race Day

If you plan on watching the Boston Marathon on Monday, April 15, be sure to cheer for the 17 members of the “Running for Rare Diseases” team who are running for the National Organization for Rare Disorders (NORD). Runners have

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Our Story — Ryan and Ethan – Adrenoleukodystrophy (ALD)

[David and Cian are traveling from Waterford Ireland to run the Boston Marathon for their patient partners Ryan and Ethan.] Ryan and Ethan Caulfield McCormack from Tramore, Co.Waterford, were recently diagnosed with Adrenoleukodystrophy (ALD).  ALD, is a deadly genetic disease

Posted in Patient Stories

2013 Rare Disease Day Relay Photo Gallery

The photo gallery from yesterday’s rare disease relay has been uploaded. While there is more to be said about the wonderful events of the day, sometimes a picture is worth a 1000 words. The gallery has also been posted to

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Rare Disease Day Relay Runner Tracking

You can track the progress of Thursday’s rare disease relay between Framingham and Cambridge by clicking on the link below. It will also work on iphone, ipad, or droid devices via an app. http://www.myathletelive.com/storage/races/2013/RDDR/index.html Photos from last year’s relay are

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Learn about NORD and meet Patient-Partner Donnie

The video below, created in 2008 as part of the 25h anniversary of the National Organization of Rare Disorders (NORD), provides background on the organization and its mission. Patient partner Donnie, who has Rubinstein-Taybi Syndrome, is featured at 4:05.

Posted in Patient Stories

How to keep up with RunningForRareDiseases.org in 2013

The 2013 Running for Rare Diseases marathon team will soon kick off its fundraising efforts and patient events leading up to the Boston Marathon on Monday April 15th. There are a number of ways you can stay connected to the

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2012 Boston Marathon Running for Rare Diseases Video

A video of the runners and patients that participated in the 2012 Running for Rare Diseases Boston Marathon event is now available: It is also highlighted on the Genzyme home page.

Posted in Uncategorized

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Welcome to the Running Archive

Archive of posts from Marathon runners dedicated to making a positive impact on the lives of people with serious disease.