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Some photos from mile 19
Click Here for full gallery Click Here for full gallery Photos by Jack Prior
View ArticleSubscribe to RunningForRareDiseases.org
The site switched to a new subscription service today from wordpress.com. Existing subscribers should receive a confirmation email to authorize the new subscription. If you would like to subscribe to...
View Article2012 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.
View ArticleHow 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...
View ArticleLearn 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,...
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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....
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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...
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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...
View ArticleFollow 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...
View ArticleMarathon 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...
View ArticleRare 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...
View ArticleHashtag #running4rare
In the spirit of simplifying our social media and web presence and reducing keystrokes, we now have harmonized our team social media accounts as running4rare: http://running4rare.org...
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