Enzyme Replacement Therapy was approved in
Canada in January 2004. The funding issue is critical at the moment and has required both education and advocacy lobbying at all levels of government to agree to how this treatment will be funded. The issue of ‘Expensive Drugs for Rare Disorders’ is now one of five elements of the proposed Health Canada is presently negotiating this issue through the National Pharmaceutical Strategy that addresses the need for an Orphan Drug Policy. In order to provide ERT a A three year National Research Study is now in place imminent.
ERT requires an intravenous infusion once every two weeks and
may be done in a hospital although home infusion is possible. There are very few side effects other than possible chills,
cold like symptoms and numbness; however these do not last long.
Research
is ongoing and new therapies are currently under development. The
Canadian Fabry Association and your doctor can keep you updated as this
research progresses.
Current ResearchAmicus Therapeutics is currently conducting Phase II clinical trials of Amigal, an experimental, oral medication for the treatment of Fabry disease. The clinical trials are taking place in the United States, Canada, Paris, France, London, United Kingdom Europe, Victoria, Australia and Porto Alegre, Brazil Latin America, and are open to adult, male or female patients with Fabry disease meeting specific eligibility criteria.
To learn more go to: http://www.amicustherapeutics.com/clinicaltrials/index.asp
Doctor Contact InformationOntario
Dr. Joe Clarke
Division of Clinical & Metabolic Genetics,
Hospital for Sick Children,
555 University Avenue, Toronto, Ontario M5G 1X8
Telephone: 1-416-813-5340
Fax: 1-416-813-5345
Dr. Jeffrey A. Medin, PhD
Senior Scientist, Ontario Cancer Institute, University Health Network Associate Professor,
Dept. of Medical Biophysics and Institute of Medical Science University of Toronto
University Health Network
67 College Street Room 406
Toronto, ON M5G 2M1
Phone: 416-340-4745
Fax: 416-340-3644
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Dr. Philip R. Wyatt
Consultant in Laboratory and Clinical Genetics
Toronto, Ontario
416 496 2050 (office)
Nova Scotia
Dr. Michael L. West
Professor and Head
Division of Nephrology
Dalhousie University
5090 ACC QE II Health Sciences Centre
5820 University Ave
Halifax, NS Canada B3H 1V8
Ph (902) 473-4023
Fax (902) 473-2675
Dr. Sarah Dyack
Clinical Geneticist
5850/5980 University Ave
PO Box 9700 Halifax, Nova Scotia, Canada B3K 6R8
Tel 902 470 8592
Fax 902 470 8709
Dr. Mark D. Ludman
Professor, Departments of Pediatrics and Medicine
Head, Medical Genetics
Dalhousie University Faculty of Medicine
IWK Health Centre
PO Box 9700, 5850/5980 University Avenue
Halifax, Nova Scotia B3K 6R8 Canada
Tel: (902) 470-8754 Fax: (902) 470-8709
Kaye LeMoine
National Coordiantor
Canadian Fabry Disease Initiative
QEII Health Centre
5790 University Avenue
Halifax, Nova Scotia B3K 6R8 Canada
Phone 902-473-5770
Fax 902-473-8099
Susan Hyndman, RN
Regional Coordiantor Fabry Disease IResearch
IWK Health Centre
QEII Health Centre
5790 University Avenue
Halifax, Nova Scotia B3K 6R8 Canada
Phone 902-473-7083
Fax 902-473-2675
Alberta
Dr. Robin Casey
Alberta Children's Hospital
2888 Shaganappi Tr. NW
Calgary, AB, T3B 6A8
Tel: 403-955-7587
FAX: 403-955-3091
Dr. Alicia K.J. Chan
Director of Metabolics Clinic Clinical Geneticist/Associate Professor
8-53 Medical Sciences Building
University of Alberta
Edmonton, Alberta
Canada T6G 2H7
Tel: (780) 407-8314
Fax: (780) 407-6845
British Columbia
Dr. Sandra Sirrs
Clinical Instructor Assistant Professor
Endocrinology and Metabolism
4th Fl Gordon & Leslie Diamond Health Care Ctr 2775 Laurel Street
Vancouver BC V5Z1M9
Tel 604 875 5965
Fax 604 875-5967
Dr. Lorne A. Clarke
Medical Director Provincial Medical Genetics Program
UBC Department of Medical Genetics
4500 Oak Street Rm C234
Vancouver, British Columbia, Canada V6H-3N1
Phone: 604-875-2157
Fax: 604-875-2376
Dr. Sylvia Stockler
Professor, Dept of Pediatrics
Head of the Biochemical Diseases Clinic
BC’s Children’s Hospital
Room K3-205
4480 Oak St.
Vancouver, BC V6H 3V4
Phone (604) 875-2628 – secretary Sharon
Quebec
Daniel G. Bichet, M.D.
Canada Research Chair, Genetics of Renal Diseases
Professor of Medicine and Physiology
Université de Montréal
Hôpital du Sacré-Coeur de Montréal
5400, boul. Gouin Ouest
Montréal (Québec) H4J 1C5 Canada
Tel.: (514) 338-2486
Fax: (514) 338-2694
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