Support Organizations

Canadian Support Organizations

This list has been accumulated over a number of years as a result of our own research as well as referrals from interested site visitors.    If you have information that would expand on our list or if you see that any of our information is out of date, we would appreciate a note to that extent.   We know that many people reference this page so we will do our best to continue keeping our listing current.   Our resources are limited and for that reason we really do rely on YOU, the visitor, the internet traveler to help us when you can.   We assume you share the same interest in helping patients and families find the disease information and support they need when affected by disease that can be devastating to families. We hope that what we do here might help in some way a patient, a family member or even a friend link up with the organization that really lend a hand by putting families in contact with experts or just providing the necessary support that makes it just that much less daunting a task to provide some assistance to those affected by these diseases.   Don’t forget that many,  many diseases although not truly curable, can be managed very effectively to allow patients meaningful and productive lives.  If the management of that disease simply requires finding the right support and resources, then a page such as we have created can make a huge difference in the quality of someone’s life.

When you provide us information about a support organization we ask that it be a Canadian affiliate or organization whenever possible and simply a valid website link is most helpful.   Even though phone numbers and e-mail addresses are very useful once verified, we like to avoid making contacts in error.  That usually does not gain us the kind of support we are working towards and we do depend on others to help us with this project.

Thank you to all who have taken the time to e-mail information, changes and corrections.  Send your corrections to:

We’ll mention that one service that has proven to be very helpful is the Access Guide Canada (AGC) site.   This is a site run by, The Canadian Abilities Foundation and is linked from their main website .  This site has a huge selection of information and links to Canadian organizations with a wide variety of purposes.

Ontario Fragile X Support Group
1979 Oakdean Crescent
Gloucester, Ontario
K1J 6H6
Ph:(613) 748-6009
Fax: (613) 748-6009

List Serve
Ph:(610) 368-9246
Ph:(949) 933-0620

About Face International
123 Edward Street,
Suite 1003
Toronto, Ontario
M5G 1E2
Ph:(416) 597-2229
Fax: (416)597-8494
Toll Free: 1-800-665-3223

Acoustic Neuroma Association of Canada
Box 369
Edmonton, Alberta
T5J 2J6
Ph:(780) 428-3384
Toll Free: 1-800-561-2262

Canadian Addison Society
193 Elgin Ave. West
Goderich, Ontario
N7A 2E7
Ph:(613) 590-1019
Fax: (613) 590-1021
Toll Free: 1-888-550-5582

Congenital Adrenal Hyperplasia
127 St. Patrick St.
Toronto, Ontario
M5T 3C1
Ph:(416) 351-7398

AGES Advocacy Group for the
235 Bay Street
Apt. 808
Ottawa, Ontario
K1R 5Z2
Ph:(613) 990-6415

Aicardi Syndrome Awareness & Support Group
29 Delavan Avenue
Toronto, Ontario
M5P 1T2
Ph:(416) 481-4095

Canadian AIDS Society
309 Cooper Street, 4th Floor
Ottawa, Ontario
K2P 0G5
Ph:(613) 230-3580
Fax: (613) 563-4998
Toll Free: 1-800-499-1986

Canadian Aids Treatment Information Exchange
555 Richmond Street W. Suite 505
Toronto, Ontario
M5V 3B1
Ph:(416) 203-7122
Fax: (416) 203-8284
Toll Free: 1-800-263-1388

AISSG Canada (West)
#17, 3031 Williams Road
Richmond, BC
V7E 1H9

Allergy/Asthma Information Association
Box 100
Toronto, Ontario
M9W 5K9
Ph:(416) 679-9521
Fax: (416) 679-9524
Toll Free: 1-800-611-7011

Canadian Alopecia Areata Association
Box 42084 Lee Ride Postal Outlet
Edmonton, Alberta
T6K 4C4

Quebec Alopecia Areata Foundation
7912 Chouinard
LaSalle, Quebec
H8N 2E6
Ph:(514) 364-6446
Ph:(514) 637-6062

Alpha-1 Antitrypsin
Toronto Hospital Western Div.
399 Bathurst St. Suite # 4-011
Toronto, Ontario
M5T 2S8
Ph:(416) 603-5020
Fax: (416) 603-5020
Toll Free: 1-800-352-8186

Alstrom Syndrome Canada
R.R. #2
Box 204
Finch, Ontario
K0C 1K0
Ph:(613) 346-2604 or

Alzheimer Society of Canada
20 Eglinton Ave. West
Suite 1200
Toronto, Ontario
M4R 1K8
Ph:(416) 488-8772
Ph:(416) 488-3778
Fax: (416) 925-1649
Toll Free: 1-800-616-8816

Amyotrophic Lateral Sclerosis (ALS) Society of Canada
265 Yorkland Blvd
Suite 300
Toronto, Ontario
M2J 1S5
Ph:(416) 497-2267
Fax: (416) 497-1256
Toll Free: 1-800-267-4257

Anaphylaxis Network of Canada
416 Moore Avenue, Suite 306
Toronto, Ontario
M4G 1C9
Ph:(416) 785-5660
Fax: (416)785-0458

Androgen Insensitivity Syndrome
206 115 The Esplanade
Toronto, Ontario
M5E 1Y7

Canadian Angelman Society
PO Box 37
Priddis, Alberta
T0L 1W0
Ph:(403) 931-2415
Fax: (403) 931-4237

Canadian Hereditary Angioedema Society
Box 2072
Claresholm, AB
T0L 0T0

Canadian Foundation for Aniridia Research
3780 Verdun Avenue
Montreal, Quebec
H4G 1K6
Ph:(514) 761-5998

Ankylosing Spondylitis Association of British Columbia (ASABC)
#111-125 West 18th St. N.
Vancouver, B.C.
V7M 1W5
Ph:(604) 879-7511

Manitoba Ankylosing Spondylitis Association
19 Carolyn Bay
Winnipeg, Manitoba
R2J 2Z3
Ph:(204) 256-5320

Ankylosing Spondylitis Support Group Of Nova Scotia
C/O Arthritis Society
2745 Dutch Village Road, Suite 100
Halifax, Nova Scotia
B3L 4G7
Ph:(902) 429-7025

Canadian Apheresis Study Group
435 St Laurent Blvd
Suite 206
Ottawa, Ontario
K1K 2Z8
Ph:(613) 748-9613

Canadian Apheresis Study Group
435 St. Laurent Blvd. Suite 206
Ottawa, Ontario
K1K 2Z8
Ph:(613) 748-9613
Fax: (613) 748-6392

Aplastic Anemia and Myelodysplasia Association of Canada
22 Aikenhead Road
Etobicoke, Ontario
M9R 2Z3
Ph:(416) 235-0468
Fax: (905)780-1648
Toll Free: 1-888-840-0039

Arthritis Self Help Group
204-825 Sherbrook Street
Winnipeg, Manitoba
R3A 1M4
Ph:(204) 783-4227
Fax: (204) 975-3027

Arthrite Montreal Arthritis
750 Dawson Ave. Suite 103
Dorval, Quebec
H9S 1X1
Ph:(514) 631-3288
Fax: (514) 631-9484

The Arthritis Society
393 University Street
Suite 1700
Toronto, Ontario
M5G 1E6
Ph:(416) 979-1149
Ph:(416) 979-7228
Fax: (416) 979-8366
Toll Free: 1-800-321-1433

The Asperger’s Society of Ontario
293 Wychwood Avenue
Toronto, ON
M6C 2T6
Ph:(416) 651-4037

Asthma Society of Canada
130 Bridgeland Ave., Ste 425
Toronto, Ontario
M6A 1Z4
Ph:(416) 787-4050
Fax: (416) 787-5807
Toll Free: 1-800-787-3880

Canadian Ataxia Support Group
37 Ericsson Bay
Winnipeg, Manitoba
R3K 0T8
Ph:(204) 885-3955

Canadian Ataxia Support Group
c/o Kiwanis Nursing Home (Rose Gallant)
11 Bryant Drive
Sussex, New Brunswick

Canadian Ataxia South Central Ontario
35 Rosewood Avenue
Contact: Cathy Chamberlain
Belleville, Ontario
K8N 4G1
Ph:(613) 962-9623

Canadian Ataxia Information Network
#13 – 1110 Odlum Drive
Vancouver, British Columbia
V5L 3L7
Ph:(604) 225-4590

Canadian Ataxia Information Network
231 – 6440 Centre Street N
Calgary, Alberta
T2K 0U4

Autism Society of Ontario
1179A King Street W.
Suite 004
Toronto, Ontario
M6K 3C5
Ph:(416) 246-9592
Fax: (416) 246-9417

Geneva Centre for Autism
250 Davisville Avenue
Suite 200
Toronto, Ontario
M4S 1H2
Ph:(416) 322-7877
Fax: (416) 322-5894

Autism Family Support and Resource Centre
104, 143 Wellington Street W
Chatham, Ontario
N7L 5K4
Ph:(519) 352-7827

B.C.N.F. Foundation
1212 West Broadway
Suite 303
Vancouver, B.C.
V6H 3V1
Fax: (604) 730-1015
Toll Free: 1-800-385-2263

Canadian Chapter of Batten Disease Support & Research Association
17 Bell Street
Regina, Saskatchewan
S4S 4B7
Ph:(306) 789-9047
Toll Free: 1-800-448-4570 or

Canadian National Institute for the Blind
Ontario Division
320 Mcleod Street
Ottawa, Ontario
K2P 1A3
Ph:(905) 826-3223
Fax: (905) 826-2125

Canadian National Institute for the Blind – Alberta-NWT Division
15 Colonel Baker Place N.E.
Calgary, Alberta
T2E 4Z3
Ph:(403) 266-8831

Canadian National Institute for the Blind – Head Office
1929 Bayview Avenue
Toronto, Ontario
M4G 3E8
Ph:(416) 480-7569
Ph:(416) 486-2500
Fax: (416) 480-7699

The Foundation Fighting Blindness – Canada
60 St. Clair Ave. E.
Suite 703
Toronto, Ontario
M4T 1N5
Ph:(416) 360-4200
Fax: (416) 360-0060
Toll Free: 1-800-461-3331

Brain Child – Office and Support Group at Hospital for Sick Children
555 University Avenue
Toronto, Ontario
M5G 1X8
Ph:(416) 813-7974

Brain Tumor Foundation of Canada
650 Waterloo Street
Suite 100
London, Ontario
N6B 2R4
Ph:(519) 642-7755
Fax: (519) 642-7192
Toll Free: 1-800-265-5106

Hereditary Breast Cancer Clinic
608, 400 Tache Avenue
Winnipeg, Manitoba
R2H 3C3
Ph:(204) 235-3674
Fax: (204) 231-3842

Canadian Breast Cancer Foundation
790 Bay Street
Suite 500
Toronto, Ontario
M5G 1N8
Ph:(416) 596-6773
Fax: (613) 596-7857

Canadian Breast Cancer Network
331 Cooper Street
Suite 602
Ottawa, Ontario
K2P 0G5
Ph:(613) 230-3044
Fax: (613) 230-4424
Toll Free: 1-800-685-8820

Canadian Breast Cancer Research Alliance
790 Bay St., Suite 1000
Toronto, Ontario
M5G 1N8
Ph:(416) 596-6598
Fax: (416) 596-1714

C.H.A.D.D. Canada Inc.
1376 Bank Street
Ottawa, Ontario
K1H 7Y3
Ph:(613) 731-1209
Fax: (604) 272-6651

Canadian National Institute for the Blind Ontario Division
320 McLeod Street
Ottawa, Ontario
K2P 1A3
Ph:(905) 826-3223
Fax: (905) 826-2125

Canadian AIDS Society
130 Albert Street
Suite 900
Ottawa, Ontario
K1P 5G4
Ph:(613) 230-3580
Fax: (613) 563-4998

Canadian Alopecia Areata Association
Box 42084,Lee Ride Postal Outlet
Edmonton, Alberta
T6K 4C4

Canadian Angelman Society
P.O. Box 37
Priddis, Alberta
T1L 1W0
Ph:(403) 931-2415
Fax: (403) 931-2415

Canadian Down Syndrome Society
811-14 Street N.W.
Calgary, Alberta
T2N 2A4
Ph:(403) 270-8500
Fax: (403) 270-8291
Toll Free: 1-800-883-5608

Canadian Hypophosphatasia Society
R.R. #2
Clayton, Ontario
K0A 1P0
Ph:(613) 256-8532

Psoriasis Society of Canada
P.O. Box 25015

Halifax, Nova Scotia

B3M 4H4

Canadian Treatment Action Council
PO Box 116, Station F
Toronto, Ontario
M4Y 2L5
Ph:(416) 410-6538
Fax: (416) 761-1012

Cancer Information Service
PO Box 1365
Regina, Saskatchewan
S4P 3B8
Ph:(306) 566-5700
Fax: (306) 566-5720
Toll Free: 1-888-939-3333

Canadian Cancer Society
10 Alcorn Avenue, Suite 200
Toronto, Ontario
M4V 3B1
Ph:(416) 961-7223
Fax: (416) 961-4189

Candlelighters Childhood Cancer
55 Eglinton Avenue E.
Suite 401
Toronto, Ontario
M4P 1G8
Ph:(416) 489-6440

The Canadian Celiac Association
5170 Dixie Road Suite 204
Mississauga, Ontario
Ph:(905) 507-6208
Fax: (905) 507-4673
Toll Free: 1-800-363-7296

Ontario Federation for Cerebral Palsy
1630 Lawrence Avenue West, Suite 104
Toronto, Ontario
M6L 1C5
Ph:(416) 244-9686
Fax: (416) 244-6543
Toll Free: 1-877-244-9686

Saskatchewan Cerebral Palsy Association
2310 Louise Avenue
Saskatoon, Saskatchewan
S7J 2C7
Ph:(306) 955-7272
Fax: (306) 373-2665

Halifax Regional Cerebral Palsy Association
Box 33075
Quinpool Postal Station
Halifax, Nova Scotia
B3L 4T6
Ph:(902) 423-8345

P.E.I. Cerebral Palsy Association
PO Box 22034
13 Linden Ave.
Charlottetown, P.E.I.
C1A 9J2
Ph:(902) 892-9694
Fax: (902) 628-8751

Newfoundland Cerebral Palsy Association
P.O. Box 23059
Churchill Square Postal Outlet
St. John’s, Newfoundland
A1B 4J9
Ph:(709) 753-9922

Cerebral Palsy Association in Alberta
#10, 8180 Macleod Trail S.
Calgary, Alberta
T2H 2B8
Ph:(403) 543-1161
Fax: (403) 543-1168
Toll Free: 1-800-363-2807

Cerebral Palsy Association of B.C.
15-3683 E. Hastings Street
Vancouver, B.C.
V5K 4Z7
Ph:(604) 205-9455
Fax: (604) 205-9456

Cerebral Palsy Association of Manitoba
825 Sherbrook Street
R3A 1M5
Ph:(204) 774-9427
Fax: (204) 775-7793

New Brunswick Cerebral Palsy Foundation
P.O. Box 2152
Saint John, New Brunswick
E2L 3V1

CHARGE Syndrome Canada
57 Meadowbank Avenue
PO Box 22042
Saint John, NB
E2K 2C7
Ph:(506) 633-8445
Toll Free: 1-866-874-2474

Chromosome 22 Central
237 Kent Avenue
Timmins, Ontario
P4N 3C2
Ph:(705) 268-3099

Chromosome 7 Project
55 University Avenue
Dept. of Genetics Room 9102
Toronto, Ontario
M5G 1X8

North American Chronic Pain Association of Canada
60 Lorne Avenue
Darthmouth, NS
B2Y 3E7
Ph:(920) 463-5587
Toll Free: 1-866-470-7246

The Alberta Cleft Palate Craniofacial Foundation
#1, 5035 – 49 Street
Innisfail, Alberta
T46 1V3
Ph:(403) 227-5641 or

Ontario Ass’n for Families of Children with Communication Disorders
Provincial Office
13 Segal Drive
Tillsonburg, Ontario
N4G 4P4
Ph:(519) 842-9506
Fax: (519) 842-3228

Congenital Adrenal Hyperplasia
127 St. Patrick St. #1002
Toronto, Ontario
M5T 3C1
Ph:(416) 351-7398

Cornelia de Lange Syndrome Canada
793 Shayne Avenue
Fort Erie, Ontario
L2A 5V4
Ph:(905) 871-8313

Cornelia deLange Syndrome Foundation
9410 – 122 Avenue
Grande Prairie, Alberta
T8V 5C6

Crohn’s and Colitis Foundation of Canada
60 St. Claire Avenue E
Suite 600
Toronto, Ontario
M4T 1N5
Ph:(416) 920-5035
Fax: (416) 929-0364
Toll Free: 1-800-387-1479

Canadian Cystic Fibrosis Foundation
2221 Yonge Street
Suite 601
Toronto, Ontario
M4S 2B4
Ph:(416) 485-9149
Toll Free: 1-800-378-2233

Canadian Dermatology Foundation
450 Central Avenue
Suite 308
London, Ontario
N6B 2E8
Ph:(519) 432-3968
Fax: (519) 613-4666

Canadian Diabetes Association
15 Toronto Street
Suite 800
Toronto, Ontario
M5C 2E3
Ph:(416) 363-3373
Fax: (416) 363-8335
Toll Free: 1-800-226-8464

Canadian Down Syndrome Society
811-14 Street N.W.
Calgary, Alberta
T2N 2A4
Ph:(403) 270-8500
Fax: (403) 270-8291
Toll Free: 1-800-883-5608

Dysautonomia Foundation Inc.
343 Clarke Avenue West
Suite 1103
Thornhill, Ontario
L4J 7K5
Ph:(905) 882-7725
Fax: (905) 764-775

Dystonia Medical Research Foundation Canada
8 King Street East, Suite 1301
Toronto, Ontario
M5C 1N8
Ph:(416) 488-6974
Fax: (416) 488-8323

Ottawa Dystonia Support Group
499 Gilmour Street
Ottawa, Ontario
L1A 5L3

Canadian Society for Ectodermal Dysplasia
232 Macintosh Drive
Stoney Creek, Ontario
L8E 4C2
Ph:(905) 664-6121

Canadian Society for Ectodermal Dysplasia – Western Canada
304 Hawkwood Blvd. NW
Calgary, Alberta
T3G 2Y5
Ph:(403) 239-0885

Ehlers Danlos Nova Scotia Support
1979 Frasers Mountain Road RR#1
New Glascow, Nova Scotia
B2H 5C4
Ph:(902) 752-6213

The Canadian Ehlers-Danlos Association
88 De Rosa Avenue
Bolton, Ontario
L7E 1A8
Ph:(416) 683-0723

Encephalitis Global
1638 Pierard Road
North Vancouver, BC
V7J 1Y2
Ph:(604) 980-2236

Environmental Illness
536 Dovercourt Avenue
Ottawa, Ontario
K2A 0T9
Ph:(613) 728-9493
Fax: (613) 728-1757

AGES Advocacy Group for the Environmentally Sensitive
235 Bay Street, Apt. 808
Ottawa, Ontario
K1R 5Z2

The Epidermolysis Bullosa Research Foundation of Canada
#13, 59 Roncesvalles Ave.
Toronto, Ontario
M6R 2K5
Ph:(416) 532-4400

Southern Alberta Epilepsy Society
Sand Man Inn Plaza
447 Mayor Magrath Drive. S.
Lethbridge, Alberta
T1J 3L8
Ph:(403) 328-8344
Fax: (403) 394-0994

Epilepsy Canada
1470 Peel
Suite 745
Montreal, Quebec
H3A 1T1
Ph:(514) 845-7855
Fax: (514) 845-7866
Toll Free: 1-800-860-5499

Canadian Epilepsy Alliance
181 Bay Street
BCE Place-Suite 1800
Toronto, Ontario
M4T 2V7

Edmonton Epilepsy Association
11007 124 St
Edmonton, Alberta
T5M 0J5
Ph:(780) 488-9600
Fax: (780) 447-5486

Epilepsy Toronto
2221 Yonge St. Suite 400
Toronto, Ontario
M4S 2B4
Ph:(416) 964-9095

Familial Polyposis Registry
Suite 1157
600 University Avenue
Toronto, Ontario
M5G 1X5
Ph:(416) 586-8334
Fax: (416) 586-8644

Canadian Fanconi Anemia
2635 Dartmouth Drive
Penticton, BC
V6A 2S7
Ph:(250) 493-2910
Fax: (250) 493-2986

Fanconi Canada
PO Box 38157 Castlewood Postal Outlet
550 Eglinton Avenue West
Toronto, Ontario
M5N 3A8
Ph:(416) 489-5502
Fax: (416) 489-6393

The Fetal Alcohol Support Network of Toronto and Peel
2445 Old Lakeshore Road
Bright’s Grove, Ontario
N0N 1C0
Ph:(519) 869-8026
Fax: (519) 869-8026

Nighingale Research Foundation
121 Iona Street
Ottawa, Ontario
K1Y 3M1
Fax: (613) 523-1958

Fibromyalgia Support Groups
393 University Avenue, Suite 1700
Toronto, Ontario
M5G 1E6
Ph:(416) 979-7228
Fax: (416) 979-8366
Toll Free: 1-800-321-1433

Fragile X Research
7968 -112a Street
Delta, BC
V4C 4Y6
Ph:(604) 590-6822

Fragile X Research Foundation of Canada
167 Queen Street West
London, Ontario
L6Y 1M5
Ph:(905) 453-9366
Fax: (905) 453-0095

Fragile X Resource Centre
191 Portsmouth Avenue
Kingston, Ontario
K7M 8A6
Ph:(613) 548-4417
Fax: (613) 548-8135

Quebec Fragile X Support Group
53 Bayview Ave.
Pointe-Claire, Quebec
H9S 5C4
Ph:(514) 426-2187
Fax: (514) 428-5870

Kitchner-Waterloo Fragile X Support Group
62 Corfield Drive
Kitchner, Ontario
N2A 3W9
Ph:(519) 894-3689
Fax: (519) 894-6333

Canadian Association of Friedreich’s Ataxia
5620 C.A. Jobin Street
Saint-Leonard, Quebec
H1P 1H8
Ph:(514) 321-8684
Fax: (514) 321-9257

G6PD Deficiency, information and links
list serve

National Gaucher Foundation of Canada
4100 Yonge Street
Suite 310
North York, Ontario
M2P 2B5
Ph:(416) 486-4338

Provincial IODE Genetics Resource Centre
800 Commissioner’s Road East
London, Ontario
N6C 2V5
Ph:(519) 685-8453
Fax: (519) 685-8214

Goldenhar Syndrome Support Network
9325 – 163 Street
Edmonton, Alberta
T5R 2P4
Ph:(780) 842-3420

HUG Foundation for Growth Problems in Children
c/o Dr. M.R. Jenner, Children’s Hospital of Western Ontario
80 Commissioners Road East
London, Ontario
N6Y 2V5
Ph:(519) 685-8500
Ph:ext 58139

Guillain-Barre Syndrome Support Group of Canada
111 Lock Street
Peterborough, Ontario
K9J 2Y5
Ph:(705) 742-1110

Canadian Hearing Society
271 Spadina Road
Toronto, Ontario
M5R 2V3
Ph:(416) 964-9595
Ph:(416) 964-0023
Fax: (416) 928-2525

Heart and Stroke Foundation of Canada
222 Queen Street
Suite 1402
Ottawa, Ontario
K1P 5V9
Ph:(613) 569-4361
Fax: (613) 569-3278
Toll Free: 1-888-473-4636

Canadian Hemochromatosis Society
#272, 7000 Minoru Blvd.
Richmond, B.C.
V6Y 3Z5
Ph:(604) 279-7135
Fax: (604) 279-7138
Toll Free: 1-877-223-4766
Canadian Hemophilia Society
652 President Kennedy
Suite 210
Montreal, Quebec
H3A 1K2
Ph:(514) 848-0503
Fax: (514) 848-9661
Toll Free: 1-800-668-2686

Hemophilia Clinic Alberta Children’s Hospital
1820 Richmond Road SW
Calgary, Alberta
T2T 5C7

The Hepatitis C Society of Canada
3050 Confederation Parkway
Unit 301-B
Mississauga, Ontario
L5B 3Z6
Ph:(905) 270-1110
Fax: (905) 270-1277
Toll Free: 1-800-652-4372

Hepatitis C Education and Prevention Society
2741 Richmond Road
Victoria, B.C.
V8R 4T3

Hereditary Hemorrhagic Telangiectasia
8651 Tulsy Crescent W.
Surrey, BC
V3W 6C5
Ph:(604) 596-3418
Fax: (604) 596-0138

Histiocytosis Association of Canada
PO Box 29095
Okanagan Mission RPO
Kelowna, British Columbia
V1W 4A7
Ph:(250) 764-6104

HUG (Help Us Grow) Foundation for Growth Problems in Children
C/O Dr. M.R. Jenner, Children’s Hospital of Western Ontario
80 Commissioners Rd. E.
London, Ontario
N6Y 2V5
Ph:(519) 685-8500
Ph:ext. 58139

Huntington Society of Canada
151 Frederick Street
Kitchener, Ontario
N2H 2M2
Ph:(519) 749-7063
Toll Free: 1-800-998-7398

Huntington’s Disease Resource Centre
C/O St. Joseph’s Auxilliary Hospital
10707 – 29 Avenue
Edmonton, Alberta
T6J 6W1
Ph:(780) 434-3229
Fax: (780) 430-9777

Canadian Tinnitus-Hyperacusis
200 Brock Street N.
Whitley, Ontario
L1N 4H5
Ph:(905) 668-3378

Canadian Hyperlexia Association
300 John Street,
Box 87673
Thornhill, Ontario
L3T 7R3
Ph:(905) 886-9163
Fax: (905) 886-4624

Canadian Hypophosphatasia Society
R.R. #2
Clayton, Ontario
K0A 1P0
Ph:(613) 256-8532

Canadian Immunodeficiencies Patient Organization
32 Concession 12 E RR#2
Hastings, Ontario
K0L 1Y0
Toll Free: 1-877-262-2476

SIDS Canada
586 Eglinton Avenue East
Suite 308
Toronto, Ontario
M4P 1P2
Ph:(416) 488-3260
Fax: (416) 488-3864
Toll Free: 1-800-363-7437

Intersex Society of North America (ISNA)
PO Box 1076
Haliburton, Ontario
K0M 1S0

Kabuki Syndrome Network
8060 Struthers Crescent
Regina, Saskatchewan
S4Y 1J3
Ph:(306) 543-8715

Kidney Foundation Of Canada
300 – 5165 Sherbrook Street West
Montreal, Quebec
H4A 1T6
Ph:(514) 369-4806
Fax: (514) 369-2472
Toll Free: 1-800-361-7494

Kidney Foundation of Canada
N302-628 W 13 Avenue
Vancouver, B.C.
V5Z 1N9
Ph:(604) 738-8486
Fax: (604) 738-4042

Klinefelter Support Group
6 Mildred Avenue
St. Catherines, Ontario
L2R 6H8
Ph:(905) 688-1153

Klippel Trenaunay Syndrome Support Group
3265 Turner Road
Windsor, Ontario
N8W 3M2
Ph:(519) 966-0604

Langer-Giedion Syndrome Association
89 Ingham Avenue
Toronto, Ontario
M4K 2W8
Ph:(416) 465-3029
Fax: (416) 465-4963

Little People of Ontario
PO Box 430712
Toronto, Ontario
M2N 6N1

Canadian Liver Foundation
2235 Shepphard Avenue E.
Suite 1500
Toronto, Ontario
M2J 5B5
Ph:(416) 491-3353
Fax: (416) 4914952
Toll Free: 1-800-563-5483

Canadian Liver Foundation
#200, 10435 178 St.
Edmonton, Alberta
T5S 1R5
Ph:(780) 444-1547
Fax: (780) 481-7781
Toll Free: 1-888-557-5516

LPBC Society for Short Stature Awareness
Box 2480
Vancouver, British Columbia
V6B 3Z7
Ph:(604) 688-4757
Fax: (604) 688-4758

LPHS International Foundation
Apt. 207, 6103-35a Ave.
Edmonton, Alberta
T6K 2G6
Ph:(780) 461-3996

Canadian Lung Association
3 Raymond Street, Suite 300
Ottawa, Ontario
K1R 1A3
Ph:(613) 569-6411
Fax: (613) 569-8860

Alberta Lung Association
#302, 609-14th Street N.W.
Calgary, Alberta
T2N 2A1
Ph:(613) 563-1565
Fax: (613) 567-0614
Toll Free: 1-800-661-LUNG

Lupus Canada
Box 64034
5512-4th Street NW
Calgary, Alberta
T2K 6J1
Ph:(403) 274-5599
Fax: (403) 274-5599
Toll Free: 1-800-661-1468

Lupus Society of Alberta
1301 – 8 St. SW
Suite 200
Calgary, Alberta
T2R 1B7
Ph:(403) 228-7956
Toll Free: 1-888-242-9182

Lymphedema Association of Quebec
687 Avenue des Pins Ouest, local A244
Montreal, Quebec
H3A 1A1
Ph:(514) 979-2463

The BC Cancer Agency Lymphedema Control Program
Vancouver Cancer Centre
600 West 10th Avenue
Vancouver, B.C.
V5Z 4E6
Ph:(604) 877-6000
Fax: (604) 872-4596

Lymphovenous Association of Ontario
PM Postal, Box 55241
1800 Sheppard Ave. E.
Toronto, Ontario
M2J 5A0
Ph:(416) 410-2250
Toll Free: 1-877-723-0033

Canadian Lymphedema Foundation/Lymphovenous Canada
8 Silver Avenue
Toronto, Ontario
M6R 1X8
Ph:(416) 533-2428
Fax: (416) 539-8348

Malignant Hypothermia Association
200 Elizabeth St.
Toronto, Ontario
M5G 2C4
Ph:(416) 340-3238
Fax: (416) 340-4960

Ontario Association for Maple Syrup Urine Disease Research
42 Alpha Mills Road
Mississauga, Ontario
L5N 1H6
Ph:(905) 567-4188

Canadian Marfan Association
128 Queens Street
Mississauga, Ontario
L5M 4Z0
Ph:(905) 826-3223
Fax: (905) 826-2125

Canada Mastocytosis
405 – 75 Huxley Street
London, ON
N6J 4W7
Ph:(519) 675-0850

The National ME/FM Action Network
3836 Carling Avenue
Nepean, Ontario
K2K 2Y6
Ph:(613) 829-6667
Fax: (613) 829-6667

Meningitis Research Foundation of Canada
P.O. Box 28015
RPO Parkdale
Waterloo, Ontario
N2L 6J8
Ph:(519) 746-8306
Fax: (519) 746-8306
Toll Free: 1-800-643-1303

Canadian Society for Metabolic Disease
PO Box 64606
1942 Como Lake Ave. Coquitlam, British Columbia
V3J 7V7
Ph:(604) 464-1017

Canadian Society for Metabolic Diseases
304 Hawkwood Blvd.NW
Calgary, Alberta
T3G 2Y5
Ph:(403) 239-0885

Moebius Syndrome Foundation of Canada
5011 Hillside Drive
Beamsville, Ontario
L0R 1B7
Ph:(905) 563-0938

The Canadian Movement Disorder Group
339 Windermere Road
London, Ontario
Ph:(519) 663-3814
Ph:(519) 663-3174

Canadian Society for Mucopolysaccharide and Related Disorders
Postal Box #64714
Unionville, Ontario
L3R 0M9
Ph:(905) 479-8701
Ph:(604) 597-6799
Fax: (905) 479-8701
Toll Free: 1-800-667-1846 or

Mesothelioma Guide
121 S. Orange Avenue,Suite 1470
Orlando, FL.
U.S.A. 32801

Canadian Multiple Endocrine Neoplasia Type 1 Society Inc.
Box 100
Meota, Saskatchewan
S0M 1X0
Ph:(306) 892-2080
Fax: (306) 892-2080

Multiple Sclerosis Society of Canada
250 Bloor Street E.
Suite 1000
Toronto, Ontario
M4W 3P9
Ph:(416) 922-6065
Fax: (416) 922-7538

Muscular Dystrophy Association of Canada
Alberta and Northwest Territories
10335 – 172 Street
Suite 104
Edmonton, Alberta
T5S 1K9
Ph:(403) 489-6322
Fax: (403) 486-1948
Toll Free: 1-800-661-9312

Society for Muscular Dystrophy Information International
Box 479
Bridgewater, Nova Scotia
B4V 2X6
Ph:(902) 685-3961
Fax: (902) 685-3962

Muscular Dystrophy Canada
2345 Yonge Street
Suite 901
Toronto, Ontario
M4P 2E5
Ph:(416) 488-2699
Fax: (416) 488-0107
Toll Free: 1-866-687-2538

The Myalgic Encephalomyelitis Society
PO Box 42504
105-1005 Columbia Street
New Westminster, British Columbia
V3M 6H5
Ph:(604) 878-7707
Toll Free: 1-888-353-6322

The Myalgic Encephalomyelitis Association
2230 Mountainside Drive #5
Burlington, Ontario
L7P 1B5
Ph:(905) 319-7966
Fax: (905) 319-3768

Myasthenia Gravis
25 Caravan Drive
Don Mills, Ontario
M3B 1M9
Ph:(416) 444-8357

The Myelin Project of Canada
4330 Spinningdale Court
Mississauga, Ontario
L5M 3J8
Ph:(905) 567-8843
Fax: (905) 567-9189

Aplastic Anemia and Myelodysplasia Association of Canada
22 Aikenhead Road
Etobicoke, Ontario
M9R 2Z3
Ph:(416) 235-0468
Fax: (416) 235-1756
Toll Free: 1-888-840-0039

Myelofibrosis List Serve
3832 Claret Street NW
Calgary, Alberta
T2L 1C1
Ph:(403) 289-9373

British Columbia Neurofibromatosis Foundation
#203, 1001 Cloverdale Avenue
Victoria, British Columbia
V8X 4C9
Ph:(250) 370-7597
Fax: (250) 370-7598
Toll Free: 1-800-385-2263

Neurofibromatosis Society of Ontario
180 Circle Lake Rd.
North Bay, Ontario
P1A 3T2
Ph:(705) 685-1409
Fax: (705) 685-1409
Toll Free: 1-866-THE-NFSO

The Association for the Neurologically Disabled of Canada (AND)
59 Clemont Road
Etobicoke, Ontario
M9R 1Y5
Ph:(416) 244-1992
Toll Free: 1-800-561-1497

Canadian Neuropathy Association
PO Box 64
Pefferlaw, Ontario
L0E 1N0
Fax: (705) 437-3065
Toll Free: 1-800-669-4918

Canadian Neuropathy Support Group
9616 81st Street
Edmonton, Aalberta
T6C 2W6
Ph:(780) 465-3208

Neutropenia Support Association Inc.
P.O. Box 243
905 Corydon Avenue
Winnipeg, Manitoba
R3M 3S7
Ph:(204) 489-8454
Toll Free: 1-800-663-8876

Nightingale Research Foundation (Fibromyalgia/Chronic Fatigue resource
121 Iona Street
Ottawa, Ontario
K1Y 3M1
Fax: (613) 523-1958

Noonan Support Group
313 – 2440 Old Okanogan Hwy.
West Bank, BC
V4T 1X6
Ph:(250) 768-1989

Ontario Obsessive Compulsive
PO Box 151
Markham, Ontario
L3P 3J7
Ph:(416) 410-4772
Fax: (905) 472-4473

Canadian Osteogenesis Imperfecta Society
128 Thornhill Crescent
Chatham, Ontario
N7L 4M3
Ph:(519) 436-0025
Fax: (519) 351-4043

Canadian Osteopathic Association
PO Box 24081
London, Ontario
N6H 5C4
Ph:(519) 681-1500
Fax: (519) 681-1500

Canadian Osteoporosis Society of Canada
33 Laird Drive
Toronto, Ontario
M4G 3S9
Ph:(416) 696-2663
Fax: (416) 696-2673
Toll Free: 1-800-977-1779 or

Panniculitis Group Mailing List
address n/a

Parkinson Foundation of Canada
4211 Yonge Street
Suite 316
Toronto, Ontario
M2P 2A9
Ph:(416) 227-9700
Fax: (416) 227-9600
Toll Free: 1-800-565-3000,ca

The Parkinson’s Society of Ottawa-Carleton
1053 Carling Avenue
Ottawa, Ontario
K1Y 4E9
Ph:(613) 722-9238
Toll Free: (613) 722-3241

CMT International Peroneal Muscular Atrophy
International Association, Inc.

1 Springbank Drive
St. Catherines, Ontario
L2S 2K1
Ph:(905) 687-3630
Fax: (905) 687-8753

PKU Canada Inc. Family Association
Hospital for Sick Children
555 University Avenue
Toronto, Ontario
M5G 1X8
Ph:(416) 813-6356
Fax: (416) 813-5345

Polycystic Kidney Disease Research Society of Canada
3 – 1750 The Queens Way, Suite 158
Etobicoke, Ontario
M9C 5H5
Ph:(416) 410-1740

Familial Polyposis Registry
Mount Sinai Hospital
Suite 1157, 600 University Avenue
Toronto, Ontario
M5G 1X5

Canadian Porphyria Foundation Inc.
Box 1206
Neepawa, Manitoba
R0J 1H0
Ph:(204) 476-2800
Fax: (204) 476-2800

Ontario Prader-Willi Syndrome Association
1920 Yonge Street C104
Toronto, Ontario
M4S 3B2
Fax: (416) 481-8657
Toll Free: 1-800-563-1123

The Canadian Prader-Willi Syndrome Organization
8-2175 Country Club Drive
Burlington, Ontario
L7M 4H9

Pseudo-Obstruction Resource Center
101 James E. Davis
Greenfield Park, Quebec
J4V 2R6
Ph:(450) 923-9439

Psoriasis Society of Canada
PO Box 25015
Halifax, Nova Scotia
B3M 4H4
Ph:(902) 443-8680
Fax: (902) 457-1664
Toll Free: 1-800-656-4494

Canadian Reflex Sympathetic Dystrophy
#102-1049 Stewart Avenue
Courtenay, B.C.
V9N 3H5
Ph:(250) 338-5835
Fax: (250) 338-5838

Retinoblastoma Family Association
14 Annette Gate
Richmond Hill, Ontario
L4C 5P3
Ph:(905) 737-2788
Fax: (905) 669-6124

Canadian Rett Syndrome Association and Resource Center
203 Bush Clover Crescent
Kitchener, Ontario
N2E 3P7
Ph:(519) 749-9930
Fax: (519) 749-9930

Ontario Rett Syndrome Association
147 Westdale Road
Oakville, Ontario
L6L 4Z7
Ph:(905) 844-8730

Reye’s Syndrome Foundation of Canada
c\o Alan Gee
Kerwood, Ontario
N0M 2B0

RTS Canada (Rubinstein-Taybi Syndrome)
111 Twain Drive
Winnipeg, Manitoba
R3K 0R2
Ph:(204) 227-7879

Schizophrenia Society of Canada
50 Acadia Avenue, Suite 205
Markham, Ontario
L3R 0B3
Ph:(905) 415-2007
Fax: (905) 415-2337
Toll Free: 1-888-772-4673

Scleroderma Society of Canada
95 Woodfield Road SW
Calgary, Alberta
T2W 5K5
Ph:(403) 281-7616
Fax: (403) 238-2773

Association de la scoliose du Quebec
10800 Rue Berri
Montreal, Quebec
H3L 2H4

The Selective Mutism Group
196 Antibes Drive
Toronto, Ontario
M2R 3H8
Ph:(416) 667-1715

Shwachman-Diamond Syndrome Canada
438 Barclay Crescent
Oakville, Ontario
L6J 6H9
Ph:(905) 338-9641

Canadian Sickle Cell Society
6999 Cote des Neiges
Suite 33
Montreal, Quebec
H3S 2B8
Ph:(514) 735-5109
Fax: (514) 735-5100

Sickle Cell Association
3199 Bathhurst St; Suite 202
Toronto, Ontario
M6A 2B2
Ph:(416) 789-2855
Fax: (416) 789-1903

SOTOS Syndrome Support Group
1944 Dumfries
Ville Mont-Royal, QC
H3P 2R9
Ph:(514) 342-8466
Fax: (514) 731-1255

Spina Bifida & Hydrocephalus
167 Lombard Avenue
Suite 977
Winnipeg, Manitoba
R3B 0V3
Ph:(204) 925-3650
Fax: (204) 925-3654
Toll Free: 1-800-565-9488

Families of SMA Canada Spinal Muscular Atrophy
PO Box 22024
Brandon, Manitoba
R7A 6Y9
Toll Free: 1-800-866-0016 or

Stevens Johnson Syndrome & Toxic Epidermal Necrolysis Syndrome Support
1569 Pharmacy Ave.
Toronto, Ontario
M1R 2K6
Ph:(416) 510-8555

Canadian Chapter of Stickler Involved People
190 Duke of Kent
Pointe-Claire, QC
H9R 1Y3

Sturge-Weber Foundation (Canada) Inc.
Address: 1960 Prairie Ave.,
Port Coquitlam,
British Columbia, V3B 1V4
Contact: Kathleen Moore
Title: President
Fax: (604)942-9209
Affiliation with:  Sturge-Weber Foundation (U.S.A.)

Canadian Association for People Who Stutter
P.O. Box 444
Succ. N.D.G.
Montreal, Quebec
H4A 3P8
Ph:(416) 252-8255
Toll Free: 1-888-788-8837

Canadian Syringomyelia Network
69 Penny Crescent
Markham, Ontario
L3P 5X7
Ph:(905) 471-8278
Fax: (905) 882-8367

National Tay-Sachs and Allied Diseases of Ontario
569 Laural Drive
Burlington, Ontario
L7L 5E1
Ph:(905) 634-4101

Tethered Cord Syndrome Support Group
7091 Tony Road
Prince George, B.C.
V2N 5P4

Thalassemia Foundation of Canada
32 Fern Avenue
Weston, Ontario
M9N 1M2
Ph:(416) 242-8425
Fax: (416) 242-8425

Thalidomide Victims Association of Canada
880 Wellington Street , Suite 616
Ottawa, Ontario
K1R 6K7
Ph:(613) 564-9000
Fax: (613) 564-9001

Thyroid Foundation of Canada
PO Box/CP 1919 Stn Main
Kingston, Ontario
K7L 5J7
Ph:(613) 544-8364
Fax: (613) 544-9731
Toll Free: 1-800-267-8822

Tinnitus Association of Canada
c/o 23 Ellis Park Road
Toronto, Ontario
M6S 2V4
Ph:(416) 762-1490

Canadian Tinnitus-Hyperacusis Center
c/o Whitby Clinic, 2nd Floor
200 Brock Street N.
Whitby, Ontario
L1N 4H5
Ph:(905) 668-3378
Ph:(905) 668-4002

Tourette Syndrome Foundation of Canada
194 Jarvis Street
Suite 206
Toronto, Ontario
M5B 2B7
Ph:(416) 861-8398
Fax: (416) 861-2472
Toll Free: 1-800-361-3120

Tracho Esphageal Fistuala Parent Network
42 Saskatoon Drive
Etobicoke, Ontario
M9P 2E9

Vancouver TTM (Tricholtillomania) Peer Support Group & ONLINE Help
on line help
Ph:(604) 733-6186

Trichotillomania Support
Box 783
Claresholm, Alberta
T0L 0T0
Ph:(403) 625-4035

Trigeminal Neuralgia Alberta Chapter
Marion Guzak
address n/a
Ph:(403) 327-7668

Tuberous Sclerosis Canada Sclerose Tubereuse
140 Green Briar Road
Alliston, Ontario
L9R 1S2
Toll Free: 1-800-347-0252

Turner’s Syndrome Society
21 Blackthorne Ave.
Toronto, Ontario
M6N 3H4
Ph:(416) 781-2086
Fax: (416) 781-7245
Toll Free: 1-800-465-6744

Hereditary Tyrosinemia
3162 rue Granville
Jonquire, Quebec
G7S 2B9
Ph:(418) 548-1580

Canadian VHL Family Alliance
4227 Hamilton Road
Dorchester, Ontario
N0L 1G3
Fax: 519 663-3789

Canadian Vitiligo Society
Western Hospital, 8th Floor Room 542
399 Bathurst Street
Toronto, Ontario
M5T 2S8

Wegener’s Granulomatosis Support Group of Canada
446-425 Hespeler Road
Cambridge, Ontario
N1R 8J6
Toll Free: 1-877-572-9474

Canadian Association for Williams Syndrome
P.O. Box 2115
Vancouver, British Columbia
V6B 3T5
Ph:(604) 853-0231
Fax: (604) 853-0232

Wolf-Hirschhorn Syndrome Support Group
Carleton Place, Ontario
K7C 3P2
Ph:(613) 257-4461

XLH Network of Canada
34640 Devon Crescent
Abbotsford, B.C.
V2S 2X6
Ph:(604) 852-9246

If you are familiar with any of the organizations listed about and notice errors or know that the organization’s contact information has changed, please contact us via e-mail, or call us toll free 1-800-320-1260, select menu option 1 and ask to speak with a pharmacist or pharmacy technician.   We appreciate the information and rely on the many people who are participating and/or support these great organizations

Top of Page