The Canadian Organization for Rare Disorders (CORD) is a Canadian
registered charity that is a network of organizations who represent people affected by
rare diseases
A rare disease is any disease that affects a small percentage of the population. In some parts of the world, the term orphan disease describes a rare disease whose rarity results in little or no funding or research for treatments, without financ ...
. CORD's purpose is to provide a strong common voice advocating for a healthcare system and health policy for those with rare disorders.
Overview
CORD represents the orphan disorders community in the development of Canadian
Orphan Drug Policy
Policy is a deliberate system of guidelines to guide decisions and achieve rational outcomes. A policy is a statement of intent and is implemented as a procedure or protocol. Policies are generally adopted by a governance body within an or ...
, including the proposed Expensive Drugs for Rare Disorders program within the National Pharmaceutical Strategy CORD is working to promote state-of-the-art Newborn Screening in all provinces and territories. CORD is working to ensure Canada's Clinical Trials Registry works effectively for those with rare disorders. CORD is committed to increasing access to genetic screening and genetic counseling for all rare disorders.
Currently,
Durhane Wong-Rieger is the President of CORD.
Their national offices are located in
Toronto
Toronto ( , locally pronounced or ) is the List of the largest municipalities in Canada by population, most populous city in Canada. It is the capital city of the Provinces and territories of Canada, Canadian province of Ontario. With a p ...
,
Ontario
Ontario is the southernmost Provinces and territories of Canada, province of Canada. Located in Central Canada, Ontario is the Population of Canada by province and territory, country's most populous province. As of the 2021 Canadian census, it ...
, with an Alberta chapter located in
Edmonton
Edmonton is the capital city of the Provinces and territories of Canada, Canadian province of Alberta. It is situated on the North Saskatchewan River and is the centre of the Edmonton Metropolitan Region, which is surrounded by Central Alberta ...
,
Alberta
Alberta is a Provinces and territories of Canada, province in Canada. It is a part of Western Canada and is one of the three Canadian Prairies, prairie provinces. Alberta is bordered by British Columbia to its west, Saskatchewan to its east, t ...
.
See also
*
Rare diseases
A rare disease is any disease that affects a small percentage of the population. In some parts of the world, the term orphan disease describes a rare disease whose rarity results in little or no funding or research for treatments, without financ ...
*
National Organization for Rare Disorders – American-based organization
*
European Organization for Rare Diseases
*
Rare Disease Day
References
External links
Official WebsiteCORD
Fan Page on Facebook
Facebook is a social media and social networking service owned by the American technology conglomerate Meta Platforms, Meta. Created in 2004 by Mark Zuckerberg with four other Harvard College students and roommates, Eduardo Saverin, Andre ...
{{DEFAULTSORT:Canadian Organization For Rare Disorders
Health charities in Canada
Medical and health organizations based in Ontario
Patients' organizations
Rare disease organizations