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| A diagnosis is the first step toward a cure. Bertrand, Victoria and Winston Might are proud to partner with Pam Lynch from Genzyme on the 2015 Running for Rare Diseases Team to support the Undiagnosed Diseases Network. |
NGLY1.org is proud to partner with the 2015 Running for Rare Diseases Team to raise awareness and funds in support of the Undiagnosed Diseases Program at NIH through NORD.
It wasn't that long ago that all of our NGLY1 kids were undiagnosed and without hope. A diagnosis can change so much!
Duke, Stanford, Baylor, Harvard, NIH are among the nodes in the Undiagnosed Diseases Program that have played/continue to play an active role in NGLY1 research.
It is our hope that through our encouragement and support, these fantastic scientists will be able to help many more undiagnosed kids as well.
Facts about this year's team:
- 102 Running Team Members (23 - Boston Marathon, 2- Paris Marathon, 80- Providence Half and Full Marathon – a few are doing more than one race)
- 74 Runner/Patient partnerships
- 58 Rare Disease Communities represented (See Table below)
- Runners from 14 different states and 3 different countries
- Patient Partners from 19 different states and 3 different countries
Rare Disease Communities Represented
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Gaucher
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