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
Website: http://raredisorders.ca/

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
Website: http://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

Canadian Society for Ectodermal Dysplasias

250 The East Mall, Suite 1770
Toronto, ON  M9B 6L3
Tel: 416-622-2874
E-mail: info@edscanada.org

Pityriasis Rubra Pilaris Support Group (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.

Website: http://www.prp-support.org/

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

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)
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