Application from an international nongovernmental organization for admission into official relations with WHO 1

Transcription

1 World Health Organization ^^^^ Organisation mondiale de la Santé DISTRIBUTION RESTRICTED EXECUTIVE BOARD Provisional agenda item 17.1 EB97/NGO/5 Ninety-seventh Session 2 October 1995 Application from an international nongovernmental organization for admission into official relations with WHO 1 1. Name of the international nongovernmental organization (hereinafter referred to as "the applicant") Alzheimer's Disease International, The International Federation of Alzheimer's Disease and Related Disorders Societies, Inc. (ADI) Alzheimer's Disease International, la Federación Internacional de las Sociedades de la Enfermedad de Alzheimer y Desordenes Asociados, Inc. (ADI) 2. Address of headquarters and name of person(s) to whom correspondence should be addressed Robert A. Gomez Secretary General Alzheimer's Disease International 45/46 Lower Marsh London SE1 7RG United Kingdom Tel: Fax: Genera 丨 objectives of the applicant (a) (c) The advancement worldwide of the well-being of persons suffering from Alzheimer's disease and related disorders, their families and caregivers. The term "Alzheimer's disease" is throughout intended to encompass the disease itself, other forms of dementia and related disorders. The provision of a worldwide forum for discussion of the problems of Alzheimer's disease. The fostering of the development of voluntary associations and societies: 1 Based on reply to questionnaire submitted by the applicant on 31 July The designations employed in this document are those which have been used by the nongovernmental organization itself and do not imply the expression of any opinion whatsoever on the part of the WHO Secretariat concerning the legal status of any country, territory, city or area or of its authorities or concerning the delimitation of its frontiers or boundaries.

2 -concerned with the care and treatment of Alzheimer's disease sufferers, and -offering advice and support to Alzheimer's disease sufferers, their families and caregivers. (d) (e) (f) (g) (h) The facilitation and promotion of cooperation among international organizations serving and related to the field of aging. The stimulation, support and encouragement of scientific research into causes, improved diagnosis, therapy, cure and prevention of Alzheimer's disease and related disorders. Reports of results and conferences, etc.,are published. The collection and dissemination of scientific and educational information dealing with Alzheimer's disease and related disorders. Encouraging the publication of public information and awareness programmes in the various countries in which members operate; and promoting the sharing and dissemination of such programmes in cooperation with various international health organizations. Educating and informing lay and professional people, interested agencies and groups. 4. What are the main activities of the applicant? (a) Holding an annual international conference. Its purpose is to stimulate and encourage the exchange of information about the latest developments in Alzheimer's disease care,treatment and research. Organized at the same time are pre-conference courses, e.g., for the September 1995 international conference in Buenos Aires, the following three intensive training courses were arranged: two full-day courses for general practitioners and one for neuropsychologists and speech therapists; and two half-day courses, one for nurses and social workers and the other for family members and caregivers. Raising worldwide awareness about Alzheimer's disease and the special care needs of persons with the disease and their families through various means, including the promotion of World Alzheimer's Day on 21 September each year. (c) Outreach to families of persons with the disease in non-member countries to bring them information and support, and to assist them in establishing a national Alzheimer's society whenever possible. (d) Information gathering and dissemination of developments in the field of Alzheimer's disease. (e) The support of members through an International Scholars Fund which sponsors representatives from Alzheimer's societies that are in early stages of development, to enable them to visit and learn about building an organization from an existing and well-established mentor society. The objective is to accelerate the representatives' learning curve so that they can be in a position to offer help more quickly and more efficiently to Alzheimer's disease caregivers, in their respective countries. The fund also supports persons from developing countries in attending and participating in the annual international conference. This interaction between members and informed speakers, in an international forum, is a crucial part of the development of member societies; in particular it enables poorer members to participate and gain valuable experience.

3 EB97/NGO/4 5. How do the objectives and activities of the applicant relate to the General Programme of Work of WHO? WHO's Ninth General Programme of Work (covering the period ) notes that while greater efforts are being made to encourage communities to assume more responsibility for planning, managing and maintaining health care, inter alia, through local groups and organizations, such community participation will call for increased management capabilities. The above-mentioned objectives and activities illustrate the community nature of the applicant and show that its activities with WHO also help to improve management capabilities. Furthermore, it is noted that the activities support the achievement of the WHO target that all countries, inter alia, will have appropriate preventive, curative and rehabilitative services for the elderly. 6. Specific interest with reference to the work of WHO (a) Please list the activities which the applicant has carried out jointly with WHO during the preceding period of working relations A booklet entitled Alzheimer s disease - help for caregivers has been developed. It aims to help those faced with caring for a person with Alzheimer's disease and related dementias. A publication entitled Alzheimer s disease: starting a self-help group is currently with WHO for revision and printing. A third publication, How to start an Alzheimer s society,is in preparation. In collaboration with WHO, the applicant has supported scientists from developing countries in obtaining training in the diagnosis of Alzheimer's disease and the provision of treatment and care. It also supports participation of developing country scientists in its annual international conference. The applicant launched the first World Alzheimer's Day on 21 September Please specify those programmes and activities of WHO with which the applicant will wish to be associated in future, and give details of planned collaborative activities with WHO With the WHO Division of Mental Health, the following joint activities have been planned: WHO will, when appropriate, cosponsor the applicant's annual international conference and World Alzheimer's Day. Further publications will be produced giving instructions, guidance and help on various topics relevant to Alzheimer's disease sufferers, their families and carers, including translations into several languages for use in different parts of the world. Generally the applicant will continue to cooperate closely on training programmes. 7. (a) Does the applicant advocate any special health measures or procedures? No. Has the applicant any special reservations as to treatment or health procedures? No. 3

4 8. History of the applicant Encouraged by WHO, the Alzheimer's Association in the United States launched Alzheimer's Disease International at a meeting held in October 1984 in Washington DC; it was attended by representatives from Australia, Canada and the United Kingdom (which already had grassroots-level Alzheimer's organizations) and Belgium, France and Germany (where individuals were hoping to create national Alzheimer's societies). The applicant's Articles of Incorporation were filed in the USA in September There are now 33 member societies in over six continents around the world and an active campaign is under way to expand membership. 9. Membership (a) List member/affiliated organizations, giving the countries in which they are established and the total number of persons who are members of each of these member/affiliated organizations There are two classes of membership: full and provisional (see Annex). Upon first joining, membership is made provisional; and it is then reviewed after a period of one year. Do member/affiliated applicants pay contributions to the applicant? Yes. (c) Are there other types of membership of the applicant such as individual members, associate members? Not at the moment. Consideration will be given at the 1995 Annual General Meeting to the possible establishment of other types of membership. 10. Is the applicant affiliated to any other international nongovernmental organization, or to an organization of the United Nations system? No. 11. Addresses of all branch or regional offices of the applicant 919 N Michigan Avenue Chicago Illinois USA 12. Structure (a) Policy-making bodies such as conference, governing body, executive committee A Council, comprising one voting representative from each member society, is the governing body. An Executive Committee is delegated, subject to the policies determined by the Council, to manage the affairs of the applicant. It is composed of the President, the Chairperson,Chairpersons of Standing Committees (education, public policy, family services, public relations, membership development, conference,

5 nominating, finance, by-laws, medical and scientific advisory), the Honorary Secretary, the Honorary Treasurer and two members-at-large. Frequency of meetings, with date of the last meeting of each The Council, Executive Committee and Standing Committees meet at least once a year, although the business of each committee is discussed by telephone or other means of communication several times in any given year. The meetings are normally scheduled to take place on the three days preceding the annual international conference. The last was held on September 1994 in Edinburgh,United Kingdom. 13. Officers The officers of the applicant, comprising the members of the Executive Committee, are as follows: Princess Yasmin Aga Khan Mr Brian Moss Dr Nori Graham Mr Jerome Stone Mr Michael Coote Ms Franceska Jordan Mr Stuart Roth Mr Michael Livni Ms Laurence d'aramon Dr Henk ter Haar Ms Lilia Mendoza Mr Jerome H. Stone Nominating Committee Ms Evelyn McPake Professor Henry Brodaty David Zimmer President Chairperson Vice-Chairperson Honorary Treasurer Honorary Secretary Education Committee Public Policy Committee Family Services Committee Public Relations Committee Membership Development Committee Conference Committee Finance Committee By-laws Committee Medical & Scientific Advisory Committee Member-at-large (vacant second Member-at-large position to be filled in September) Officers receive no remuneration for their services; however, the position of Secretary General is salaried. 14. Can officially designated representatives speak authoritatively for the membership on matters concerned with the stated purposes of the applicant? Yes. Mr Robert Gomez, Secretary General; Mr Brian Moss, Chairperson; and Dr Nori Graham, Vice- Chairperson. 15. Finances Financial statements for the years have been provided and are held by the WHO Secretariat. 16. Publications ADI global perspective - newsletter produced on average once every six months. As from 1996 it is intended that it will be published regularly every three months. Alzheimer,s disease - help for caregivers (joint booklet produced with WHO, in English; a Spanish version is awaited).

6 Conference results are published in medical journals. One such publication, Predictive testing for Alzheimer,s disease, is awaiting publication. The results of the session of the international conference in Buenos Aires in September 1995,on Screening for cognitive impairment in general practice, will be published at a later date. A list of publications offered by member societies is produced in over 40 languages. 17. Documentation A copy of the applicant's By-laws has been provided and is held by the WHO Secretariat.

7 ANNEX COUNTRY/AREA MEMBER/AFFILIATED ORGANIZATION NO. OF MEMBERS* Full members Argentina Asociación de Lucha contra el Mal de Alzheimer 400 Australia Alzheimer's Association in 7 states Austria Selbsthilfegruppe, Angehôrige der Alzheimerkranken n/a Belgium a.s.b.l. Ligue Alzheimer n/a Canada Alzheimer Society of Canada n/a Chile Corporación Chilena de la Enfermedad de Alzheimer y n/a Afecciones Similares Denmark Alzheimerforeningen Finland Alzheimer's Society of Finland n/a France Association France Alzheimer Germany German Alzheimer's Society Inc. n/a India Alzheimer's and Related Disorders Society of India 490 Ireland The Alzheimer's Society of Ireland Israel Alzheimer's Association of Israel 700 Japan Association of Family Caring for Demented Elderly Mexico Mexican Alzheimer's Association n/a Netherlands Alzheimerstichting New Zealand Alzheimer's Society New Zealand Puerto Rico Asociación de Alzheimer 500 South Africa Alzheimer's & Related Disorders Association 600 Spain Federated Association of Family Alzheimer Associations n/a Sweden Alzheimer's Society of Sweden n/a * The numbers are based on a response to a survey carried out during of the applicant's member societies.

8 EB97/NGO/5 Annexe Switzerland Association Alzheimer's Suisse United Kingdom Alzheimer's Disease Society Alzheimer's Scotland - Action on Dementia 900 USA Alzheimer's Association 221 Chapters Provisional members Brazil ABRA Associaçao Brasileira de Alzheimer Ecuador Italy Luxembourg Rep. of Korea Romania Uruguay Venezuela Alzheimer's Disease, Ecuador Federazione Alzheimer Italia Association Luxembourg Alzheimer Association of Family Caring for Demented Elderly in Korea Romanian Alzheimer Society Fundación Uruguaya de Alzheimer Fundación Alzheimer de Venezuela