Rare Disorders

Canadian Organization for Rare Disorders

CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

Website: http://raredisorders.ca/
Contact: info@raredisorders.ca

Dystrophic Epidermolysis Bullosa Research Association of Canada (DEBRA Canada)

DEBRA Canada is a voluntary, registered, non-profit organization dedicated to providing support for families affected by Epidermolysis Bullosa (EB) and to increasing Canadians’ awareness of this challenging disease. DEBRA Canada is the only organizational body in Canada exclusively committed to the care and support of families affected by EB and to improving their quality of life. The original aims of the charity were to stimulate knowledge of, and interest in, EB for the benefit of those with the genetic disorder and their families, and to fund medical research. From these humble origins, DEBRA has grown significantly with DEBRA groups now established under the umbrella of DEBRA International in over 40 countries around the world.

Website: http://debracanada.org/
Contact: debra@debracanada.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 website a mailing list has been set up for day to day discussions by individuals within the group.

Website: http://www.prp-support.org/
Contact: http://www.prp-support.org/wp/about-the-support-group/contact-us/

Canadian Hidradenitis Suppurativa Foundation

The CHSF Foundations objective is to:

  • Increase awareness of HS including associated health issues;
  • Empower HS patients and their circle of care to lead productive and healthy lives;
  • Create HS research opportunities;
  • Establish cross-specialty dialogue to improve HS patient outcomes;
  • Collaborate with international HS foundations to optimize research, education and patient care.

Website: http://hsfoundation.ca/en/home/
Contact: info@hsfoundation.ca