Established in 1989, the ENMC has been instrumental in facilitating communication and support for the European neuromuscular disease community. In particular, its experience in hosting and funding workshops and stimulating the establishment of research consortia and clinical trials makes the ENMC a key player in Europe in the Network of Excellence in NMD.

The ENMC’s expertise is in communication and management. It is supported by and has strong ties with European-wide patient organizations. The ENMC is supported by 9 patient organizations throughout Europe. The organization attends important scientific conferences in the field of neuromuscular disease (eg World Muscle Society meeting; Myologie 2005). The ENMC organizes 9-12 scientific and clinical trial workshops a year for researchers in the field of Neuromuscular Disease.

While most participants are from European countries, several Americans also have participated in past workshops. The ENMC Clinical Trial Network was established in 2001 to promote the development of protocols and outcome measures for clinical trials.

Website

http://www.enmc.org/
 

Annette Boersen joined the ENMC on May 1, 2007 as research manager. Her background is in biomedical science and before joining the ENMC she has worked for Clinical Research Organisations. Annette Boersen is responsible for representing the ENMC in the scientific community, supervising and supporting the ENMC organizational infrastructure and related activities as well as financial and office management. Additionally, she works with the team on the development of policies and subsequent implementation of the activities

 On February 1, 2009 Maryze Schoneveld van der Linde joined the ENMC as project manager for Treat-NMD. In 1995 Maryze Schoneveld van der Linde graduated with a masters degree in Cultural Anthropology at the University of Leiden. Since 1996 she has been working with migrant and refugee women from Turkey and the Middle East Region in empowerment related issues and activities.

Maryze Schoneveld van der Linde has been an active board member of the Dutch Association for Respiratory Support (VSCA, 1997 - 2006) and an active board member of the International Pompe Association (IPA, 1999 - 2006).

Currently she is advisor of the IPA. In 2007 she started a consultancy in health and care called Patient Centered Solutions. With her consultancy she provides clients with experienced based expertise, knowledge and practical insights from a patient's perspective regarding issues related to health and care.

 Katelijne Senden joined the ENMC on September 1, 2008, as project co-ordinator TREAT-NMD. Katelijne has a master degree in business administration and a bachelor degree in hotel administration. Before joining the ENMC she has worked for a clinical research organisation and a fertiliser company.

Katelijne Senden is responsible for representing ENMC in the TREAT-NMD project both by being responsible for various workpackages as well as by supervising ENMC's full project responsibility.

As the Management Assistant, Annelies Zittersteijn is responsible for all administrative and organisational aspects of the ENMC workshops. She is the principal contact person for participants with administrative matters. Present in the office three days a week and also present during the workshops in Naarden, Annelies is available to assist the workshop leader and attend to any organisational details involving the participants.