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NDF Certified Patient Advocates

                                                  NDF Certified Patient Advocates

NDF is proud to enlist dedicated GNE Myopathy patients from around the world to assist us with our mission of patient advocacy worldwide.  Our NDF Certified Patient Advocates (CPAs) make up a group of dedicated GNE Myopathy patients residing in many regions of the world. The NDF’s first group of CPAs received certificates and pins at our recent Symposium on GNE Myopathy held at UCLA. These Advocates are committed to help NDF in our efforts to bring programs to patients and families in their respective countries. These CPAs’ mission is aligned with the NDF’s goal to enhance the quality of lives of GNEM patients and their families. The Certified Patient Advocates speak many languages and are therefore able to reach out to patients and potential patients in their home country in order to offer support and resources that new and current patients may otherwise be unaware of.  In addition, these Advocates, with the support of NDF organize and host Patients’ Days in their respective countries.  We have Certified Patient Advocates in these regions of the world.   Please contact us at for more information or one of these dedicated advocates. 

United States of America

Eastern Region:  Amy Curran

New England:  Imad Kazim

Western Region:  Tara Voogel


Middle East

Saudi Arabia:  Abdullah Al Shamrani

Israel:  Maya Davidovich Cohen

Turkey:  Suleyman Kus



United Kingdom:  Mona Patel


Michela Onali          

Valeria Pace

CPAs:  Click here to login to the NDF Certified Patient Advocate's portal