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.
1 in 12 Canadians has a rare disorder. Many others are affected or at risk but remain undiagnosed and unaware. CORD provides information to individuals, and links to other rare disorder support groups and organizations from Prince Rupert, British Columbia to St. John’s, Newfoundland.
CORD represents the orphan disorders community in the development of Canadian Orphan Drug Policy, 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 counselling for all rare disorders.
About 1 in 12 Canadians, two-thirds of them children, are affected by a rare disorder. But because each disease affects only a small number of individuals, understanding and expertise may be limited and fragmented across the country.
Right now, only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe. People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change.
About 80% of rare diseases are caused by genetic changes. 25% of children with a rare disease will not live to see their 10th birthday.
A rare disease is a condition affecting fewer than 1 person in 2000 in their lifetime. There are over 7000 known rare diseases and dozens more being discovered each year so in total, 1 in 12 Canadians will be affected by a rare disease.
The Canadian Organization for Rare Disorders (CORD) has released Canada’s Rare Disease Strategy, developed with experts from every sector. The Strategy details the extraordinary burden faced by Canadian families with rare illnesses. Challenges include misdiagnosis, unnecessary surgeries, social isolation, financial hardship, lack of treatment options and early death. These are the same challenges faced by Canadians with “non-rare” conditions, but the impact is often much more severe. The Strategy proposes a five-point action plan that will address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat.
(French version of the full strategy document will be available soon)
Take action by signing our online petition here.
Durhane Wong-Rieger has served on numerous health policy advisory committees and panels and is a member of the Advisory Board for the Canadian Institutes of Health Research Institute of Genetics and the Patient Liaison Forum for the Canadian Drugs and Technologies in Health. Durhane is immediate Past-Chair of the International Alliance of Patient Organizations, and Board Member representing patient interests at DIA International Association. She has a PhD in psychology from McGill University.
Wayne Critchley is a Senior Associate with Global Public Affairs’ Health & Life Sciences Practice, providing counsel to leading biopharmaceutical companies and other health policy stakeholders. His track record in the public sector includes previously serving as Executive Director of the Patented Medicine Prices Review Board and Vice President of the Canadian Agency for Drugs and Technologies in Health. He is recognized as an expert in pharmaceutical pricing, reimbursement and market access.
Cathy Evanochko was an originating board member of Tuberous Sclerosis Canada Sclérose Tubéreuse (TSCST) at its inception in 1989. After serving on the Board for several years, she took a hiatus, but rejoined the Board again in 2009. Cathy is now serving as Co-Chair of Tuberous Sclerosis Canada Sclérose Tubéreuse. She joined the Canadian Organization for Rare Disorders Board in 2013. Cathy and her family live in Calgary, Alberta.
Maureen Smith, M.Ed. has more than 30 years of experience as an educator. Ms. Smith has a long history of active collaboration with the medical research community subsequent to a childhood diagnosis of a rare disorder. She was the first layperson on the Canadian federal government’s Inter-Agency Advisory Panel for Research Ethics and was the patient advocate on the National Placebo Committee. She is also co-chair of the Rare/Orphan Disease program track for the Drug Information Association’s Annual Meeting.
Riyad Elbard, Past – President of Thalassemia Foundation of Canada, has been a leading member of the Thalassemia Foundation of Canada for over 20 years. He has a special interest and expertise in blood safety represents the Thalassemia Foundation of Canada on the Board of Directors of the Thalassemia International Federation where he has been serving in the position of Treasurer since 1998. A passionate and outspoken thalassemia patient has acted as the patient’s voice at forums and meetings both at the national and international level.
Dr. John H.A. Dyck is Assistant Professor in the Department of Political Studies at Trinity University and also serves as pre-law advisor. Dr. Dyck received both his Bachelor of Arts in Political Studies and his Master of Arts in Political Theory from the University of Manitoba and recently completed his DPhil at Oxford. His research interests in B.C., Canadian, and American Government. His current research includes the study of the relationship between love and justice in the works and thought of Paul Ricoeur.
Gena Brumitt is past President of DEBRA Canada, the national charity supporting people with Epidermolysis Bullosa, and Executive member of DEBRA International / Regional Ambassador of its “EB Without Borders” Committee. She successfully lobbied for U.S. “National EB Awareness Week” legislation, later founding “International EB Awareness Week” which now has support in 100+ countries.
John Adams is Co-Founder & President and CEO of Canadian PKU and Allied Disorders, a non-profit, and works as global director of business development for OZ Systems, a software company specializing in information management tools for newborn screening, childhood health and early education programs. He worked as a reporter for The Globe and Mail, chief of staff to an Ontario Cabinet Minister and was elected to Toronto City Council three times. One of his four children has PKU.
Kelly Gorman has over 12 years experience in the health charity sector. Currently, Kelly co-leads the Public Issues team in advocating for healthy public policy at the Canadian Cancer Society, Ontario Division. Previously at Cystic Fibrosis Canada, Kelly led advocacy issues relating to access to care and quality of life for the CF community.
Patti Bryant volunteers as Treasurer on the Epilepsy Newfoundland and Labrador (ENL) Board. She is the ENL delegate to the Canadian Epilepsy Alliance and Chair of Dravet.ca. Patti is the mother of three beautiful children, one of whom has been diagnosed with Dravet syndrome. She believes the silver linings in the journey of dealing with Dravet are very important: the fantastic people you meet, the bonds you make, and the truly measurable difference you can make in other people’s lives.
Christine White was a founding member of the National Gaucher Foundation of Canada, an organization that supports patients living with this rare genetic disease. Christine has been President of the organization since 2005. Two of Christine’s children were born with Gaucher disease so she knows first hand the struggles families face living with a rare condition. Christine is an advocate for Canadian Gaucher patients and for all Canadians whose lives have been impacted by rare disease.
Ian Stedman is an Ontario lawyer who was diagnosed with Muckle-Wells Syndrome at the age of 32. He has travelled the long road that most patients with rare disorders travel and understands the struggles of the journey. Ian is passionate about working hard to make the journey to diagnosis and treatment quicker for others who are searching for their answers. Ian also has experience working in both the private and public sectors and has a passion for public policy and applied ethics.