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   HISTORY

The recommendation to establish a permanent Canadian body at the National level for the coordination of the management of inherited metabolic disorders emerged from a federal government-sponsored meeting held in Ottawa, Ontario on September 24, 1982.

The critical steering committee spearheading this venture consisted of Dr. Joe Clarke, Dr. Charles Scriver, Dr. Philip Banister (representing Health and Welfare Canada), Dr. James Haworth and Marcia Sharpe (executive director, Canadian Dietetic Association).

Subsequently representatives for 17 centres across Canada providing services for individuals with inborn errors of metabolism (IEM) were named to the committee, by-laws were drafted, an Executive Council elected, and the name ‘Canadian Association of Centers for the Management of Hereditary Metabolic Disorders/ Association Canadienne des Centres de Traitement Pour Les Maladies Metaboliques Hereditaires’ adopted, unofficially nicknamed the “ Garrod Association Garrod”. The founding executive consisted of Dr. Joe Clarke (Chair), Dr. Claude Laberge (Vice-Chairman), and Dr. James Haworth (Secretary – Treasurer).

The initial membership fee was $10.00 and currently stands at $15 annually! Membership was opened to all concerned with IEM, annual scientific and Council meetings held and newsletters distributed.

Over the years formal collaborations have been fostered with the Western Group of Investigators of Inborn Errors of Metabolism, the Canadian Paediatric Society, the Canadian Dietetic Association, the Canadian Society for Metabolic Diseases, CORD (Canadian Organization of Rare Disorders), and most recently the Canadian College of Medical Geneticists (CCMG) and SIMD. Members of the Garrod Association also have been and are active members on the boards of the SSIEM and SIMD. Many have played key roles in developing guidelines and evaluating neonatal screening programmes, the National PKU Collaborative Study, the National Registry of Inherited Metabolic Diseases, and in conducting Manpower and Needs Assessment Surveys to name but a few.

The development of the Garrod Association is synonymous with the development of the National Food Distribution Centre for the Treatment of Hereditary Metabolic Diseases in Montreal in 1973, initially a federally supported facility sponsored by Steinberg’s Inc. The non-profit National Food Bank is the distribution centre for products used in the treatment of IEM to all metabolic centers in Canada. Close liaisons between the Food Bank and the Garrod Association are maintained to this day with members of the Garrod Association ex-officio members of the Board of the Food Bank.

By 2001, there were 108 members registered with the Garrod Association. Current membership consists of individuals from Canada, the U.S.A. and Europe.

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    GAUCHER DISEASE: Canadian Guidelines for Treatment by Enzyme Replacement with Imiglucerase or Substrate Reduction Therapy with Miglustat (v.8, March 2007)

    FABRY DISEASE: Recommendations for Diagnosis, Management, and Enzyme Replacement Therapy in Canada (November 2005)

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    Copyright (c) 2001-2009
    Canadian Association of Centres for the Management of Hereditary Metabolic Diseases
    Association Canadienne des Centres de Traitment pour les Maladies Metaboliques Hereditaires.