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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. 

North America

Amy Curran - Eastern Region

Imad Kazim - New England

Tara Voogel - Western Region

Melissa - South East Region

Middle East

Abdullah Al Shamrani - Saudi Arabia

Maya Davidovich Cohen & Guy Ratson - Israel

Suleyman Kus - Turkey

Sabeen Faisal - Pakistan

Roberta Cirisyan - Turkey & Greece


Mona Patel & Valenee Gosine - United Kingdom

Michela Onali & Valeria Pace - Italy

Vaneesha Mohadawo & Abajee Dharmajee – France

Saskia Melches - Germany


Ashutosh Verma - India

Kelly Ma - Taiwan/China

Tae-Eun Kang- South Korea


Rose Okoma - Ivory Coast





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