For those of you that don’t know me, my name is Kristin. I’m an avid runner, a patient living with a rare disorder called Homocystinuria (HCU), and I’m beyond thrilled to be part of this year’s Boston Marathon Team! I can’t believe in…
NORD Online Silent Auction Open
The outpouring of support this year has been fantastic.  We presently have near 80 items up on the Online Silent Auction and more to be added.  We will continue to take donations right up until the closing of the auction on…
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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 also been posted to…
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Simply Connect
A loved one passed away this week shortly after turning 100 years old. She really was an unbelievable woman. If she didn’t answer the door, she was probably out in the garden, raking the leaves in the back yard or…
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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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Genzyme Boston Marathon Team Rare Disease Day Virtual 5k for NORD
The Genzyme Boston Marathon Team’s Virtual 5k for NORD is a virtual event on Rare Disease Day to benefit the National Organization for Rare Disorders (NORD) and all those impacted by rare diseases. Event can be completed by anyone, anywhere. Walk,…
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