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Patient Support Groups

Note: Although the CDA provides links to other Internet sites, the organization does not endorse or guarantee the accuracy of information found on these sites.

The following organizations run support groups, conferences, and other events of interest to patients.

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.

Web site
Contact: info@skinpatientalliance.ca
CSPA Poster: Education, Support and Advocacy, for patients - by patients

ALOPECIA AREATA

Canadian Alopecia Areata Foundation
The purpose of CANAAF is:

  1. To support research to find a cure for alopecia areata.
  2. To support research to find effective treatment for alopecia areata.
  3. To support those affected by the disease,
  4. Endeavour to educate the public at large, our school systems, the private sector and Government officials about alopecia areata

Contact the CANAAF at: canaaf@gmail.com  

 

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

 

Quebec Alopecia Areata Foundation
14419 Jolicoeur, no. 104
Pierrefonds QC  H9H 5M5
Web site
Personnel:
Cheryl Carvery, President, Tel: 514-620-8180
Louise Haineault, French Inquiries: 450-719-0537

 

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

Palopecia - Guelph Alopecia Areata Support Group
This is a support group for anyone who has ever suffered from Alopecia.  Members can benefit from meeting others with the same condition and learning how to cope or even help others learn to cope.  Open to anyone in the Guelph, Kitchener/Waterloo and Cambridge areas.

Carol Jones
497 Victoria Rd. N. Ste. 13 
Guelph, ON 
Tel: 519-824-3449
carojo@rogers.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

 

Children with Alopecia - Winnipeg
Contact: Tracy 204-633-6593
alopeciaisbeauty@live.ca 
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: 905-668-4913
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 
www.eczemahelp.ca

 

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

Activities:  International board of directors and international medical advisors
International Medical/Scientific Hidradenitis Suppurativa Symposia
Free to access (subscription) Scientific/Medical research database
Fundraising for medical/scientific research
Quarterly Online Newsletter

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

 

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.

5792 Côte des Neiges, Suite 268
Montréal QC H3S 1Y9
Tel: 514-735-1149
E-mail: aql@infolympho.ca
Web site

Activities:
Monthly support group meetings

MELANOMA

Melanoma Network of Canada
Mission: Our organization is the only national, patient-led organization whose mission is to provide melanoma patients and their caregivers with current and accurate information and services in the fight against melanoma. Through our network, we provide funding for awareness and education, advocacy and research.

99 Bronte Road, Suite 324
Oakville, Ontario
L6L 3B7
Tel: 289 242-2010
Email: acyr@melanomanetwork.ca
Web site: www.melanomanetwork.ca

 

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

PEMPHIGUS AND PEMPHIGOID

Canadian Pemphigus and Pemphigoid Foundation
The Canadian Pemphigus and Pemphigus Foundation was created to help Canadians who are suffering from these diseases obtain the help they need to better cope with their illness and the drugs used in their treatment.  We help set up and sustain support groups across the country, develop and distribute relevant information and educational materials for Canadians and work with other organizations and medical professionals who share our interests in improved health management strategies and finding a cure.  We are caring, compassionate and committed to making a difference in the lives of Canadian pemphigus and pemphigoid patients and their families. Please visit our website for more information and to find a support group near you.

Contact
Email: info@pemphigus.ca
Website: www.pemphigus.ca
Brochure [pdf]

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

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

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

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

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