Header Ads

test

Calling all European GNE Myopathy Patients For A Networking Event In France


Dr Anthony Behin and his colleagues from Lyon, France, would like to invite European GNE Myopathy patients and patient advocacy groups for an informal networking event:

Date of Event: March 16, 2016
Time of Event: 12 noon to 4.00 p.m.
Place of Event: Lyon, France

The purpose of this event is to bring patient advocacy groups and patients together to provide an update on the work they are doing, to network, and to connect with doctors and other GNE Myopathy patients.

This meeting is supported by a grant from Ultragenyx Pharmaceutical company that is conducting clinical trials using Sialic Acid.

   Here  is an outline of the meeting topics:
   Overview of GNEM
·       Prevalence of GNEM worldwide              
·       Patient Advocacy Support for GNEM
·       Current Resources for GNEM patients
·       Networking

I encourage any GNE Myopathy patients living in Europe to attend.  Please contact Dr. Behin if you need additional information and are interested in applying for a travel stipend, his email is  Anthony.behin@aphp.fr,


In addition, a patient with a neuromuscular disease who uses a wheelchair has offered to assist those who are attending this event, and need information regarding accessible travel and other logistics. Please contact her at:  maryze@pacesworld.com

Below is a sample of the registration form.

WEDNESDAY 16TH MARCH 2016FROM 12 NOON - 4 PM
NAME:

INSTITUTION/ORGANISATION:

ADDRESS:

TELEPHONE:

EMAIL:

ADDITIONAL COMMENTS:








No comments:

Powered by Blogger.