The patient voice is being heard at ENMC workshops!
The ENMC very much encourages that persons directly involved with a Neuromuscular disorder participate in ENMC workshops. In order to explain their role as a participant, the ENMC has developed a Patient Toolkit with guidelines and information about the general course of a workshop.
For an overview of the toolkit, please click HERE
The ENMC is an international platform organization supporting research for neuromuscular disorders and strives to facilitate communication amongst scientists and clinicians working in the area of neuromuscular disease. The main route whereby ENMC facilitates communication and collaboration is via the funding and organisation of workshops with regard to a range of neuromuscular diseases including Spinal Muscular Atrophies, Duchenne Muscular Dystrophy, Congenital Muscular Dystrophies, CIDP and many others.
ENMC is sponsored by a broad range of International patient and health care associations and pharmaceutical industries only on the restricted condition that ENMC maintains its guardian role to keep the workshops for scientists, clinicians and patients neutral and independent from its sponsors.
ENMC Mission statement
"The mission of ENMC is to encourage and facilitate communication and collaboration in the field of neuromuscular research with the aim of improving diagnosis and prognosis, finding effective treatments and optimizing standards of care to improve the quality of life for affected people and their families".
For further information, please contact the ENMC office at firstname.lastname@example.org or visit our contact page.