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LA Mayor's Office Acknowledges the NDF's Advocacy with GNEM

Wednesday, October 22, 2014

Rare Disease Day in La Jolla, California. Calling All GNE-Myopathy Patients

 Fellow GNE Myopathy friends, and family there will be a Rare Disease Day in February 2015 in La Jolla, California.  This will be held on February 27th., 2015.  I am posting this so those interested  would have enough time to plan on coming.  My understanding is that there will be doctors and researchers who have and are studying GNE Myopathy.    Our disease will be featured at this symposium.  Please follow the link and register, it is free.  The organizers need to get a count of how many of us will be attending.  Please make an effort to come.  I have posted the link with the information about the location and other particulars.  Please contact me if you have any questions.  

Sixth Annual Rare Disease Day Symposium

Treating Disease with Sugars

Disease Featured: Hereditary Inclusion Body Myopathy (HIBM)


February 27, 2015
9:00 a.m. – 5:00 p.m. PST
10905 Road to the Cure
La Jolla, California map & directions


This year's event is organized by 
Hudson Freeze, Ph.D. 

http://www.sanfordburnham.org/research/programs/genetics/symposium/Pages/2015.aspx


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