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Canadian Organization for Rare Disorders

© Mary M. Alward

CORD (Canadian Organization For Rare Disorders) is committed to enhancing the lives of everyone who is affected by rare disorders. Their objective is to collect and distribute information on rare diseases throughout the world. Their goal is to identify “specific groups living with a rare disorder and to encourage medical research into causes and effects of rare disorders.” They also wish to see the implementation of an “orphan drug act” in Canada. CORD works with the medical community and media to increase awareness of rare disorders in this country. CORD distributes information in understandable language on over 6,000 rare disorders. They link individuals and families together through a specific network system.

CORD is the only organization of its’ kind in Canada. Hundreds of individuals and families, as well as health care professionals, support groups and human service professionals depend on CORD to provide much needed services.

Rare disorders strike people of all ethnic backgrounds and ages. Some disorders, such as Asperger’s Syndrome, Tay Sacks, Huntington’s Disease and Cystic Fibrosis are genetic, some are acquired and others fall within widespread health conditions, such as stroke, heart disease and cancer.

Rare disorders, also known as “orphan” disease, affects 1 in 20,000 people. However, 6,000 rare diseases affect 3 million Canadians.

CORD is not a government agency, but realizes the need for information on “orphan” diseases. The organization provides referrals to sources of assistance and support for those who suffer from these disorders. CORD receives no government funding, but fulfills its’ mission through the generosity of its’ donors.

CORD’s statistics indicate that the organization provides an essential service to Canadians who have been diagnosed with a rare disorder. If families agree, CORD will link them with other individuals and families who suffer from the same rare disorder. The organization provides the medical community with “cognizant” information on all rare diseases that they encounter.

All names and addresses are kept confidential by CORD unless families or individuals give them permission to contact other families or support groups.

CORD was founded by Maureen Gaetz-Faubert. Maureen was suffering from an unknown rare disorder. A diagnosis of her condition could not be made. Maureen suffered, but was determined it would not be in vain. She continued to seek answers about her condition and was finally diagnosed by an Edmonton geneticist. Maureen had a rare disorder called, Ehlers-Danlos Syndrome.

Maureen knew what a profound affect that lack of information on rare diseases caused for people suffering from them. These diseases caused both physiological and psychological suffering. This knowledge confirmed to Maureen the need to establish a support group that would allow these people to realize they were not alone. She also recognized the need for an information network for Canadians who were diagnosed with rare disorders.