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The Dutch Neuromuscular Diseases Association

The Vereniging Spierziekten Nederland (VSN), is an active and dynamic association of and for people with a neuromuscular disease. The VSN aims at protecting the interests of its members. Its activities consist of providing information, organising mutual support and stimulating scientific research. The VSN was one of the founding members of EAMDA and the ENMC and favours international cooperation in the field of research and the development of therapies.

The VSN was founded in 1967 and now has approximately 9.000 members. More than 300 volunteers actively support the association's activities.The VSN maintains a network of 10 regional groups and 14 national, diagnosis-bound support groups. These groups monitor international developments in the field of research, are involved in psychosocial care and provide information on technical appliances.

Regional groups
The regional support groups focus on the mutual support aspect of the activities. VSN members organise meetings and contact each other to provide mutual support. Discussion groups and annual meetings on general themes are other examples of regional activities.

National diagnosis-bound support groups
The 14 diagnosis-bound groups each have their own medical advisers. The following groups are included:

  • Amyotrofic Lateral Sclerosis
  • Arthrogryposis Multiplex Congenita
  • Friedreich's Ataxia
  • Chronic Idiopathic Axonal Polyneuropathy (CIAP)
  • Duchenne/Becker Muscular Dystrophy
  • Congenital Myopathies/Metabolic Myopathies
  • Myotonic Dystrophy
  • Facioscapulohumeral Muscular Dystrophy
  • Guillain Barré Syndrom
  • HMSN I,II,III (Charcot Marie Tooth)
  • Myasthenia Gravis
  • Myositis
  • Postpolio
  • Spinal Muscular Atrophies (SMA)

These groups inform their members on recent medical developments and initiate relevant research. They also publish brochures, leaflets and newsletters to inform the members.

Care
An important part of the Association's initiatives concerns the improvement of medical care for people with neuromuscular diseases. Relevant experts closely cooperate with the Association to improve diagnostic procedures, rehabilitation and genetic counselling. Concentration of care in specialised centres improves the level of care. Current areas of attention are registration of patient data, development of medical protocols, and technical appliances.

Other activities
Every year 6 issues of the Association's magazine "Contact" are published. It informs members on current developments and serves as a platform for members' contributions.

Information materials
The VSN publishes many booklets, brochures and leaflets. They mostly concern diagnosis-specific information but also inform on general subjects such as education, respiratory support, or physiotherapy. Special information packages are available for medical professionals. A list of publications is available.

Documentation
The bureau has its own documentation service. It gathers and catagorises all available information through bibliographic services and other sources. A library service is available.

Telephone support
To diminish the actual damage caused by neuromuscular diseases, quick referral of patients to the experts is of paramount importance. Telephonic advice on this and other medical subjects can be sought from the bureau. This also applies to information on social services and technical appliances.

European cooperation
VSN participates along with 20 other countries in the European Alliance of Muscular Dystrophy Associations (EAMDA). EAMDA looks after the interests of people with a neuromuscular disease at a European level. EAMDA has taken the initiative to found the European Neuromuscular Centre (ENMC). ENMC aims at stimulating and supporting neuromuscular research by facilitating international cooperation between research groups.

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VSN - Lt. gen. van Heutszlaan 6 - 3743 JN Baarn tel: 035-5480480
e-mail: vsn@vsn.nl - Bank: ING 1422400

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