SKIN DISORDERS
Canadian Skin Patient Alliance
A new national advocacy group for people with skin disorders. The goal of the alliance is to raise awareness at Health Canada and provincial/territorial ministries of health about these diseases and their impact on Canadians.
Contact: info@skinpatientalliance.ca
Web site
ALOPECIA AREATA
National Alopecia Areata Foundation (NAAF)
PO Box 150760
San Rafael, CA 949915-0760
Tel: 415-472-3780
Fax: 415-472-5343
Web site
GTA Chapter of the NAAF
Toronto and all surrounding areas welcome to join us! Meetings start September 2008 and will run every other month.
Please contact:
Julie Powers
905-954-1218
jewelmpowers@hotmail.com
Alopecia World
Alopecia World is a new social networking site for people living with hair loss, their loved ones and friends. Join today for support, to encourage others and make new friends. It's 100% free!
Web site
BASAL CELL CARCINOMA NEVUS SYNDROME
BCCNS Life Support Network
This is a young non-profit organization whose mission is to provide counselling and support services to children and adults all over the world who are faced with the challenges of an inherited form of skin cancer, one of many manifestations of a syndrome most commonly known as BCCNS, NBCCS and/or Gorlin Syndrome.
Patricia Pearsell, Canadian Representative
Whitby, ON
Tel: 905-664-4913
E-mail: smoochky@sympatico.ca
Web site
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
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
ECZEMA
Eczema Society of Canada
Ms Amanda Cresswell-Melville, Executive Director
417 The Queensway South
P.O. Box 25009
Keswick, Ontario
L4P 2C4
905-535-0776
Web site
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
HIDRADENITIS SUPPURATIVA
Hidradenitis Suppurativa Foundation, Inc.
Purpose: The HSF is a San Diego-based non-profit public benefit corporation created to foster and encourage global research by developing and supporting an interdisciplinary family of scientists and physicians devoted to studying HS and its molecular and cellular basis. The HSF is dedicated to improving the quality of life for individuals and families affected by Hidradenitis Suppurativa.
7895 Via Belfiore #4
San Diego, CA 92129
Hours: Monday through Friday, 9:00 am - 5:00 pm, (Pacific Time)
Web site
info@hs-foundation.org
HYPERHIDROSIS
International Hyperhidrosis Society
520 Walnut St, Suite 1160
Philadelphia, PA 19106
info@sweathelp.org
Web site
LUPUS CANADA
Lupus is a complex and baffling condition that can target any tissue or organ of the body, including skin, muscles, joints, blood and blood vessels, lungs, heart, kidneys and the brain. Lupus is a chronic disease caused by inflammation in one or more parts of the body and affects more than 50,000 Canadians. A common symptom of lupus is the Malar “butterfly” rash, a red rash that extends across the upper cheeks and bridge of the nose. Over 80% of people diagnosed with lupus are women in the prime years of their lives – between the ages of 15 and 45 years. Especially impacted are communities which include women of African, Caribbean, Asian and Aboriginal descent.
Lupus Canada and local lupus organizations strive to increase public awareness about lupus and provide educational resources to people living with lupus as well as their friends and family. Often known as “the disease of a thousand faces,” Lupus Canada provides the latest information, including strategies to live well with lupus, “ask the experts” section, advocacy resources and tools, and the latest information on lupus research in Canada. To learn more, please contact Lupus Canada.
590 Alden Road, Suite 211
Markham, ON L3R 8N2
Tel: 905-513-0004 or 1-800-661-1468
Fax: 905-513-9516
lupuscanada@bellnet.ca
Web site
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
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
MELANOMA
National Comprehensive Cancer Network (US)
PEMPHIGUS AND PEMPHIGOID
Canadian Pemphigus and Pemphigoid Foundation
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
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
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
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
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
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
Website
VITILIGO
Canadian Vitiligo Society
Western Hospital, 8th Floor
Room 542
399 Bathurst St
Toronto ON M5T 2S8
Tel: 416-603-5953