About Us

Background

Amyotrophic lateral sclerosis, or motor neurone disease, is a muscle wasting condition which affects individuals and those who care for them across the world. To help people with the disease, groups of people have come together to form associations (which are listed under the Directory of Associations)

The International Alliance of ALS/MND Associations was founded in November 1992 to provide a forum for support and the exchange of information between the worldwide associations. More than 50 national patient support and advocacy groups from over 40 countries worldwide have joined together to form the International Alliance.

The Alliance functions primarily as a forum for the exchange of information on all aspects of the disease, research and management of care as well as the provision of support through networking and sharing the development of ideas on good practice. Its developing role is the advancement of the patients' views in discussions affecting the well-being of people with ALS/MND. As part of this activity, Alliance members host the annual International Symposium on ALS/MND, which is the pre-eminent event bringing together leading researchers and health care professionals worldwide to present and debate key innovations in their fields.


Objectives

The Alliance’s objectives are:

  • to increase awareness of ALS/MND worldwide
  • to exchange and disseminate information
  • to improve the quality of care
  • to stimulate and support research
  • to provide an international identity


Tasks Faced

Key shared tasks which transcend national boundaries are:

  • Caring for people affected by ALS/MND and providing a range of forms of support to people with ALS/MND, families and carers
  • Stimulating and supporting research efforts
  • Education of health & social care professionals about the disease
  • Informing the general public
  • Raising funds to support services or finance research


Common Problems

Common issues faced are:

  • the inadequacy of health systems in dealing with the unique problems of ALS/MND
  • the lack of knowledge among doctors and other professionals about how to care for people with ALS/MND
  • the comparatively small numbers of people with ALS/MND
  • the difficulty of attracting finance and volunteers
  • the lack of a clear direction for research initiatives


Membership

Membership of the International Alliance of ALS/MND Associations is extended to any not-for-profit organisations with defined constitutions which are in accordance with the aims and objectives of the Alliance. There is an elected Executive Committee which reports to the Annual Meeting of the Alliance, held in conjunction with the International Symposium. Applications for membership are welcomed from organisations seeking either Full or Associate Membership. Further information is available here.

Activities