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Running for a Rare Disease! January 9, 2014

Posted by mvarlan in Uncategorized.
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Hope for Hypothalamic Hamartomas has been contacted by Genzyme – a major Boston based corporation.

Their employees run the Boston Marathon to raise awareness for rare diseases and they are considering hypothalamic hamartomas as their cause this year.

For event details click on the links below.

 http://runningforrarediseases.org/ 

 http://runningforrarediseases.org/2013/11/10/wanted-passionate-patient-partners/ 

You can also watch the following short video about the program  http://www.youtube.com/watch?v=t7Qh0JfaFr8.

If you are interested in learning more about this opportunity please contact Ilene Miller at (240) 205-4807 or ilenepennmiller@gmail.com.

Thanks all and hope to hear back soon! This would be a huge fundraising and awareness raising opportunity.

Regards,

Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center

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