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Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

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2014 Million Bike Ride for Research

The Million Dollar Bike Ride, held on May 3, 2014 in Philadelphia, exceeded its goal and raised $1.4 million for rare disease research!

UPenn's Center for Orphan Disease Research and Therapy more than matched the funds raised which means that $35,000 will allow for a dedicated post-doctoral fellowship grant on NTSAD's behalf! The Request for Applications (RFA) will be available in early August. Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. if you wish to receive a copy of the RFA.

Mark your calendars for next year's ride - May 9, 2015!

Read WHYY's coverage of this year's ride and see the slideshow here featuring Team Captain Ruth Feldman!

Many thanks to Team NTSAD for riding and raising nearly $2,500! The Penn Medicine Center for Orphan Disease Research and Therapy (CODRT) partnered with Rare Disease Cycling to focus efforts on rare disease research. Stay tuned in the months to come about next year's ride! To learn about the CODRT's work, read more here

 

 

 

News Feed: Tay-Sachs

Latest Tay Sachs Disease News and Research

News Feed: Sandhoff

Latest Sandhoff Disease News and Research

News Feed: Canavan Disease

Latest Canavan Disease (Leukodystrophies) News and Research
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    Scientists have used human stem cells to dramatically improve the condition of mice with a neurological condition similar to a set of diseases in children that are invariably fatal, according to an article in the June issue of the journal Cell Stem Cell.

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News Feed: DNA Science

Genetics in context
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    Members of a three-generation family in France who suffer from widespread infections and fragile skin, joints, bones, and blood vessels share an underlying and unexpected immune system glitch, according to a new report in Science
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    On Monday November 5, officials at the FDA listened for three hours to arguments for and against “fecal microbiota transplants” – mostly for. Speakers reported that the procedure has saved thousands of lives. The technique

News Feed: Gangliosidosis-1

Latest Gangliosidosis News and Research

 

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