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Gne Myopathy Study in France And a Patient's Summit in September

Dear Friends:
     Here is an HIBM study that is taking place in France.  Please check the hyper-link for specific information.

Clinical, Biological and NMR Outcome Measures Study for Hereditary Inclusion Body Myopathy Due to Mutation of UDP-N-acetylglucosamine 2-epimerase/N-acetylmannosamine Kinase Gene (GNE) (ClinBio-GNE)
Contact: Teresa Gidaro, MD PhD+33 1 42 16 66 48t.gidaro@institut-myologie.org




Location:  France
Institute of MyologyRecruiting
Paris, France, 75013
Principal Investigator: Teresa Gidaro, MD PhD        
https://clinicaltrials.gov/ct2/show/NCT02196909?term=hibm&rank=5


     There will be a rare patient's advocacy summit to be held in Huntington Beach, California on  September 11-12, 2014.  For those who are unable to attend, there will be live streaming on the days  of the summit.  I have attached the link below.

2014 RARE Patient Advocacy Summit

RARE Patient Advocacy Summit
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Please join us for our
3rd Annual “RARE Patient Advocacy Summit
held on September 11-12, 2014
at the Hyatt Regency in Huntington Beach, California.
Empowering Patient Advocates to Become Successful Activists
http://globalgenes.org/2014-rare-patient-advocacy-summit/

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