One in 12 Canadians has a rare disorder. Approximately, 3 million Canadians and their families face a debilitating disease that severely impacts their lives.
Who is CORD?
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.
How does CORD serve Canadians with Rare Disorders?
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.
What are CORD’s Key Challenges?
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.
KEY FACTS
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.
STRATEGY
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.
- FAQs: Everything you Want to Know about Canada’s Rare Disease Strategy
- Executive Summary (English)
- Executive Summary (French)
- Canada’s Rare Disease Strategy (English)
(French version of the full strategy document will be available soon)
Take action by signing our online petition here.
CORD Board of Directors 2019 - 2020
Cathy Evanochko
Co-Chair
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.
Jane Farnham
Co-Chair
Jane Farnham is a seasoned healthcare executive with extensive experience in private and public sector healthcare environments and a proven track record in business strategy, advocacy, stakeholder relations, health policy and communications. Jane currently holds the position of Vice President, Strategic Partnerships, External Relations and Advocacy with BioScript Solutions, an integrated provider of patient-centred health solutions for Canadians with complex medical conditions. As the mother of a child with a rare disorder, Jane is a passionate advocate for the patient voice in health policy. Jane previously served as board chair for both The Ontario and Canadian Pharmacists Associations and has held numerous other elected and appointed board positions.
Maureen Smith
Secretary
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.
Vijay Sappani
Treasurer
Vijay is Founder and CEO of Ela Capital Inc, a venture capital firm focused on life sciences, cannabis and medical devices. He is co-founder of Ela Genomics, Qunuba Sciences, High12 Brands and TerrAscend, one of the largest publicly traded Canadian Cannabis company.
Vijay is a long-term patient rights advocate and active in the rare disease space as a parent of a child with CDG and founder of CDG Canada. He is also on the board of Canadians for Fair Access to Medical Marijuana (CFAMM), MacDonald Laurier Institute and previously served on the boards of over a dozen organizations.
Vijay has over 20 years of multinational experience in the healthcare sector. He also served as Senior Special Assistant to the Ontario Minister of Health and Long-Term Care and was a member of the board for the ministry’s Pharmacy Council. Vijay holds a Bachelor of Pharmacy and a post-graduate in marketing management.
Oxana Iliach
Executive Member-at-Large
Oxana Iliach, PhD has more than 10 years of regulatory affairs experience, interacting with Health Canada and other regulatory agencies. She has a deep understanding of regulatory requirements and processes for drug development and approval. She believes that patients should be at the center of any drug development and regulators should include patients in the decision-making process for drug approval. Oxana is also a member of Canadian Association of Professionals in Regulatory Affairs.
Patti Bryant
Board Member
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.
Riyad Elbard
Board Member
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.
Joanne Koskie
Board Member
Joanne Koskie is a Vice President at Cohn & Wolfe Canada and an award-winning communications professional with over two decades of experience advising the biopharmaceutical industry and patient organizations on all aspects of healthcare communications and advocacy. Professionally and personally, Joanne is dedicated to helping build the capacity and amplify the voices of rare disease groups to drive disease awareness, patient and caregiver education, and advocacy for access to treatment.
Lisa Machado
Board Member
Lisa Machado is a former financial journalist who, after being diagnosed with a rare leukemia in 2008, now writes and speaks about what it means to live with cancer. She is also the founder of the Canadian CML Network, and the author of the award-winning “Living Well with CML: What you need to know to live your best life with Chronic Myelogenous Leukemia.” Lisa is a frequent speaker and has been interviewed by CTV News, Rogers Media and the CBC and featured in a number of newspaper articles. She has written for The Caregiver Network and Cure Today magazine. Lisa also writes a column at CML-IQ.com and you can find her blog at cmlnetwork.ca.
John Moore
Board Member
John Moore has been in the employee benefits and health industry for over 40 years, in consulting and management and 25 years as Vice President Business Development with one of Canada’s largest Third Party Administrators (TPA). John has worked closely with regulators, industry associations and organizations on issues related to the group insurance industry and employee benefits. He is also involved through the Strategic Health Forum and his new firm, with other industry leaders in working with private and public payers as well as manufacturers, to improve access to, funding and pricing of prescription drugs in Canada.
Rick Moss
Board Member
Rick Moss is currently responsible for Advocacy and Partnerships for Jesse’s Journey. Jesse’s Journey is a registered charity that funds Duchenne muscular dystrophy research worldwide. Rick has been with the organization for more than 16 years and was the Managing Director for 13 of those years.
Prior to that, Rick was General Manager for a variety of Radio stations in Ontario.
Staff
Durhane Wong-Rieger
President & CEO
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.
Angela Covato
Managing Director
Angela Covato has been actively involved with the rare disease community since her daughter’s diagnosis with a rare disease in the late 1990’s and brings over 16 years of experience in working directly with patients and patient organizations. Angela has been CORD’s Managing Director since 2010. This role has provided Angela the opportunity to collaborate with a variety of stakeholders in the Canadian and international rare disease community. She is dedicated to ensuring that people with rare disorders have access to the treatments and care they require.
