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.
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. |
