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Executive Committee

The Executive Committee consist of representatives from the member organisations, which are supporting the ENMC on an annual basis. They meet twice a year to decide on the selection of the workshop applications and to make strategic decisions for future ENMC activities. 

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The Chair of the ENMC:

Dr. E. Sterrenburg, is the current Chair of the ENMC Executive Committee. She holds a PhD in molecular biology and was an active researcher in the field of neuromuscular disorders. She now is manager policy and research at the Prinses Beatrix Spierfonds. The Prinses Beatrix Spierfonds is a Dutch charity dedicated to curing all neuromuscular diseases.

"We promote and fund research into better treatments and cures. Since this is often a long process we also try to improve daily care and the quality of life for people with neuromuscular disorders."


Our current members are:

Dr. A. Ambrosini represents Telethon and UILDM (the major Italian Muscular Dystrophy AAnna_photo.jpgssociation) in the ENMC Consortium that she chaired in the period 2009 – 2011. She has a PhD in Pharmacology, is Head of Neuromuscular Research Programs for Fondazione Telethon, Italy and Chief Scientific Officer for AriSLA, a Foundation dedicated to support research on Amyotrophic Lateral Sclerosis which involves Telethon, the main Italian patient Organisation (AISLA), together with other partners. She is responsible for developing clinical research programs in the field of inherited neuromuscular diseases and is member of the TREAT-NMD Global Registry Oversight Committee Vice-President of the Italian TREAT-NMD Registry.


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Dr. A. Méjat is member of the Executive Committee of ENMC since November 2015. He is a member of the Board of Directors at AFM-Téléthon (the French neuromuscular disease association), CECS Association (I-Stem - Stem cells research center, Evry, France) and GenAtlantic Association (Atlantic Gene Therapies, Nantes, France). He is affected by a Bethel Myopathy diagnosed when he was 5 year-old. He is a researcher (PhD) at the NeuroMyoGene Institute (INMG, http://www.inmg.fr - Lyon, France) where he leads a research team on Emery-Dreyfuss muscular dystrophy.  


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Dr. A. von Moers (vice chair) is member of the board of DGM (Deutsche Gesellschaft für Muskelkranke). He is a pediatrician and he is specialized in child neurology. He is working as a clinician in the field of neuromuscular disorders for more than 25 years. He is involved in Care NMD, MD-NET, and clinical trials in Duchenne muscular dystrophy.

 


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Dr. I. Meijer is a member of the Board of Spierziekten Nederland, the Dutch patientorganization of people with muscular diseases. Ingeborg has a PhD in biomedicine from the University of Leiden, and worked subsequently in a biotech company (Celltech),  in health research policy (Gezondheidsraad-RGO) and in European science innovation and technology policy evaluation (Technopolis Group) before returning to academia. As a researcher at the Center for Science and Technology Studies (CWTS) her focus is on the societal use of research, investigating researcher and stakeholder visions and values.

 


 

Jes Rahbek

Dr. J. Rahbek is a specialist in neuromuscular rehabilitation and the Chief Medical Officer and Director of the Danish National Rehabilitation Centre for Neuromuscular Diseases. In ENMC, Jes represents Muskelsvindfonden, the Danish patient organization for NMD where he is chairman of the scientific committee, ethical committee and international relations committee. Jes has been a member of ENMCs’ Governing Board since 1993 and is a member of the Executive Committee in TREAT-NMD.

 


 Dr. K. Adkock represents the Muscular Dystrophy UK organisation.  

 


 

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Raffaella represents the Swiss Foundation for Research on Muscle Disease (FSRMM) at ENMC since 2012. She holds a PhD in Biochemistry and was an active researcher in the field of muscle physiology and neuromuscular junction formation. In 2007, she joined the TREAT-NMD network and worked on the realization and publication of standards and guidelines for preclinical studies in animal models of neuromuscular diseases. Her present interests are the implementation of quality in the preclinical research for neuromuscular diseases and the translation to therapeutic treatments.




 

The Executive Committee shall receive no compensation. Expenses made (such as travel to the bi-annual Executive Committee meetings in Amsterdam and accomodation costs) shall be covered by the patient organisations themselves.