Patient Support Groups
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The following organizations run support groups, conferences, and other events of interest to patients.
ALOPECIA AREATA
Victoria Alopecia Areata Support Group
5216 Worthington Road
Victoria BC V8Y 2T8
Personnel:
Fay Melling: 250-658-2167 fmelling@shaw.ca
Events:
Meets every 2 months
Alopecia Areata Patient Support Group (Winnipeg)
Personnel:
Laurel: 204-667-0812
Brian: 204-831-5995
Lucille: 204-339-6194
Gisele: 204-257-7207
Quebec Alopecia Areata Foundation
14419 Jolicoeur, no. 104
Pierrefonds QC H9H 5M5
Web site: www.naaf.org
Personnel:
Cheryl Carvery, President, Tel: 514-620-8180
Louise Haineault, French Inquiries: 450-719-0537
National Alopecia Areata Foundation
PO Box 150760
San Rafael, CA 949915-0760
Tel: 415-472-3780
Fax: 415-472-5343
Web site: www.alopeciaareata.com
DYSTROPHIC EPIDERMOLYSIS BULLOSA
Dystrophic Epidermolysis Bullosa Research Association of Canada (DEBRA Canada)
Purpose: Provide a focal point to enable and empower individuals and families affected by EB to help themselves nd each other by sharing their experiences, their knowledge and mutually support one another. Increase awareness and knowledge of EB and DEBRA Canada throughout the country, particularly among the various levels of government and within the health and medical community. Act as an advocate for improvements in health, medical, educational, social, economic and public and private policies, programs and institutions on behalf of all EB sufferers and their families, individually and for the collective benefit of all. Organize meetings, roundtables and conferences for all EB sufferers, their families, caregivers, health and medical practitioners and government officials. Produce and publish information materials for the education, health and medical professions and the general public in both official languages.
Postal Office Fruitland, Box No. 11111
Stoney Creek ON L8E 5P9
Telephone: 1-800-313-3012
E-mail: debra@debracanada.org
Web site: www.debracanada.org
The Epidermolysis Bullosa Research Foundation of Canada
13-59 Roncesvalles Ave
Toronto ON M6R 2K5
Tel: 416-532-4400
E-mail: naa@interlog.com
ECTODERMAL DYSPLASIA
Canadian Society for Ectodermal Dysplasias
250 The East Mall, Suite 1770
Toronto ON M9B 6L3
Tel: 416-622-2874
E-mail: info@edscanada.org
Web site: www.edscanada.org
ECZEMA
The EASE Program (Eczema Awareness, Support and Education Program)
PO Box 964
435, place d'armes
Montréal QC H2Y 3J4
Tel: 1-866-4ECZEMA (1-866-432-0362)
Fax: 514-288-5680
Web site: www.eczemacanada.ca
Eczema Society of Canada
Michelle Carroll, Executive Director
24 Park Rd
Whitby ON L1M 1G7
Web site: www.eczemahelp.ca
HYPERHIDROSIS
International Hyperhidrosis Society
520 Walnut St, Suite 1160
Philadelphia, PA 19106
info@sweathelp.org
Web site: www.sweathelp.org
LYMPHOVENOUS DISORDERS
Lymphovenous Canada
The purpose of our web site is to link people in Canada with dysfunctioning lymphatic systems with health care professionals and support groups in their communities and around the world. Through this site we will keep you informed of some of the latest developments in scientific research and treatment in this area.
8 Silver Avenue
Toronto ON M6R 1X8
E-mail: info@lymphovenous-canada.com
Web site: www.lymphovenous-canada.ca
Lymphovenous Association of Ontario
Goals: Promote research towards improved methods of treatment and a cure of lymphovenous disorders. Raise awareness of the public, health care professionals and those affected by lymphovenous disorders with respect to the causes and treatments of these disorders. Foster an environment where persons affected by lymphovenous disorders can share their experiences.
P M Postal Box 55241
1800 Sheppard Ave East
Toronto ON M2J 5A0
E-mail: lymphontario@yahoo.com
Web site: www.lymphontario.org
Lymphedema Association of Quebec
We hope to provide support, awareness, education and the pursuit of a cure for lymphedema to the many of us who are afflicted with this chronic disease in Québec, Canada, and elsewhere world-wide. This includes those who have primary lymphedema, from lymphatic mal-function, or secondary lymphedema, due to surgery, lymph node removal, and/or radiation therapy, as well as their care-takers and health professionals.
4792 Côte des Neiges, Suite 268
Montréal QC H3S 1Y9
Tel: 514-735-1149
E-mail: infolympho@icomm.ca
Web site: www.infolympho.icomm.ca
Activities:
Monthly support group meetings
MELANOMA
Alberta Society of Melanoma
Mission: Provide support to people living with melanoma and their families. Alleviate fear, misconceptions and to encourage a positive attitude about living with cancer. Foster and support melanoma research. Disseminate information about melanoma.
8927 Saskatchewan Drive
Edmonton, Alberta T6G 2B1
E-mail: Information@melanoma.ca
Web site: www.melanoma.ca
National Comprehensive Cancer Network (US)
Web site: www.nccn.org/patients/reference_links.asp
PITYRIASIS RUBRA PILARIS DISEASE
PRP Support Group
Goal: To inform others about the disease, to seek out any research being done, and generally to provide a forum for people to discuss their experiences and treatments. As well as this web site a mailing list has been set up for day to day discussions by individuals within the group.
Web site: www.prp-support.org
PORPHYRIA
Canadian Porphyria Foundation Inc
487 Walker Ave
Box 1205
Neepawa MB R0J 1H0
Tel/fax: 204-476-2800 or 1-866-476-2801
E-mail: porphyria@cpf-inc.ca
Web site: www.cpf-inc.ca
PSORIASIS
Psoriasis Society of Canada
Purpose: To assist our affiliated chapters, and to represent their members' needs on a national level: assist those who have psoriasis by providing up-to-date information on treatment, programs and services; form support groups across Canada; increase awareness of psoriasis among health care professionals and the public; consult with government to assist with programs and services; encourage research programs to find the cause and cure for psoriasis.
PO Box 25015
Halifax NS B3M 4H4
Tel: 902-443-8680 or 1-800-656-4494
Fax: 902-443-2073
Web site: www.psoriasissociety.org
Activities:
National Psoriasis Conference
National Psoriasis Walk
Newsletter
Local support groups
RARE DISORDERS
Canadian Organization for Rare Disorders
PO Box 814
Coaldale AB T1M 1M7
Tel: 403-345-4544 or 877-302-7273
Fax: 403-345-3948
Web site: www.cord.ca
ROSACEA
Rosacea Awareness Program
Established in 1995 in order to provide non-commercial information on this increasingly common, but relatively unknown skin condition that is estimated to affect 2 million Canadians.
368 Notre Dame Street West, SuIte 402
Montreal QC, Canada H2Y 1T9
Tel: 1-888-767-2232
E-mail: rosacea@meca.ca
Web site: www.rosaceainfo.com
SCLERODERMA
Scleroderma Society of Canada
95 Woodfield Rd S W
Calgary AB T2W 5K5
Tel: 403-281-7616 or 866-279-0632
E-mail: info@scleroderma.ca
VITILIGO
Canadian Vitiligo Society
Western Hospital, 8th Floor
Room 542
399 Bathurst St
Toronto ON M5T 2S8
Tel: 416-603-5953
WOMEN'S HEALTH
Women's Health Matters web site
Read news, interviews and articles reviewed by experts at Sunnybrook and Women's Health Sciences Centre, or join discussion groups at Le Club. Explore topics like pregnancy, sexual health, cancer, and osteoporosis. Search our Resource Database.
Web site: www.womenshealthmatters.ca
02/27/2006
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