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.

Mission:

Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.

Objectives:

  • Educate and raise awareness among health professionals, media, general public and policy makers about rare disorders in Canada
  • Facilitate and participate in implementation of Canadian Rare Disease Drug Strategy
  • Develop, support, and participate in implementation of Canadian Rare Disease Strategy/Framework
  • Increase capacity of patient community to advocate and participate on behalf of rare disease
  • Promote research on rare disorders in Canada

What are CORD’s Priorities?

  • CORD represents the rare disease community in the development of a Canadian Rare Diseases Drug Strategy in collaboration with Health Canada and other public and private decision makers.
  • CORD is committed to promoting state-of-the-art Newborn Screening and increasing access to genetic testing, genomic diagnosis, and genetic counselling for all rare disease patients and families.
  • CORD is committed to implementing Canada’s Rare Disease Strategy which covers screening and diagnosis, access to specialists and centres of expertise, access to community support including patient organizations, timely access to the best treatment, and support for Canadian excellence in research and development, including clinical trials and new technologies.
  • CORD is committed to full engagement of patients and families in all policy and decision making processes relevant to rare diseases.

 

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.

(French version of the full strategy document will be available soon)
Take action by signing our online petition here.

CORD Board of Directors 2023 - 2024

Cathy Evanochko

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.

Riyad Elbard

Treasurer

Riyad Elbard, President of Thalassemia Foundation of Canada, has been a leading member of the Thalassemia Foundation of Canada for over 20 years. He is dedicated to advocating for optimal care for all hemoglobinopathies patients. He represents the foundation on various committees and has been instrumental in building and maintaining strong collaborative networks with partners and stakeholders. 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.


Christine White

Secretary

Christine White was a founding member of the National Gaucher Foundation of Canada, an organization that supports patients living with a 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.

Brad Alyward

Board Member

Brad has 20+ years of diverse experience, including leadership roles in national negotiations for the pan-Canadian Pharmaceutical Alliance (pCPA) and consulting on market access and reimbursement strategies, this professional offers comprehensive insights into the Canadian pharmaceutical landscape. Starting as a business analyst and project manager in various industries, they later specialized as a pharmacist and strategic consultant.

Catherine Boivin

Board Member

Catherine Boivin is a trained theater designer and worked as part of a creative team for Cirque du Soleil Entertainment Group. As a patient advocate living with Spinal Muscular Atrophy (SMA), she has always combined her career in the Arts with her desire to support and give back to Canadians living with neuromuscular disorders. She has been involved with Muscular Dystrophy Canada (MDC) as a fundraising volunteer and event organizer for the past 20 years. She is on the Advocacy Advisory Committee for MDC, and has been an active advocate on behalf of MDC, CureSMA Canada and CORD for access to treatments for SMA in Canada.

Carla Chabot

Carla is the Executive Director at BridgePoint Center for Eating Disorder Recovery and has over 20 years of leadership experience spanning corporate, government, financial, and non-profit sectors. She joined the Canadian Organization for Rare Disorders Board in 2023. Carla and her family live in Outlook, Saskatchewan and have been impacted by 16p11.2 deletion syndrome. This personal experience fuels her dedication to join a community that advocates for families and their loved ones have access to the treatment, support, and research opportunities they need to enhance the quality of life for those affected by rare disorders.

Jida El Hajjar

Board Member

Jida El Hajjar is the Executive Director of the Loeys-Dietz Syndrome Foundation Canada. Jada holds a PhD in molecular biology. She is on the oncology clinical research unit at the Jewish General Hospital. She subsequently worked at the Rossy Cancer Network, at McGill University, to improve the quality of care provided to cancer patients. She also served as VP of the Quebec Breast Cancer Foundation where she established the investment strategies to support the mission of the Foundation. In 2020, she was awarded the ARISTA young executive prize organized by the Jeune Chambre de Commerce de Montreal, as well as the 2021 “Leadership au féminin” prize by the regroupement de jeunes chambres de commerce de Québec

Sara Ethier

Sara has been in the rare space for over a decade after her child was diagnosed with a systemic autoinflammatory disease (SAID). She understands the challenges many families experience in their rare journey, including delayed diagnosis, accessing effective treatment options, and finding appropriate supports and resources.  Sara is a communication and liberal arts educator.  She is a patient advocate with Cassie and Friends (C+F) working to create awareness and support for youth and families affected by rare rheumatic diseases.  She also volunteers and participates with the Canadian Autoinflammatory Network (CAN-RAC) narrative-based medicine (NBM) sessions that use storytelling to offer support, understanding and reflection for those living with autoinflammatory diseases

Walter Robinson

Walter is an accomplished bilingual public affairs executive with 30 years of experience in achieving public policy change at every level of government, including two decades in life sciences leadership roles. He offered first-day testimony to the Romanow Royal Commission on the Future of Healthcare and has served in various volunteer governance capacities in the healthcare ecosystem. He is a former Ottawa Business Journal Top Forty Under 40 honoree, a United Way Community Builder Award recipient, an undefeated “white-collar” boxer, and now produces and emcee’s the annual Fight for the Cure Gala in support of the Ottawa Cancer Foundation.

Alice Williams

Alice is a rare disease mom to two young adult children with Wilson disease, a rare inherited disorder that causes copper to accumulate in the liver, brain and other vital organs. Left untreated, Wilson disease is fatal. Having recently retired from a 30+ year career in corporate communications, Alice looks forward to applying her communications and advocacy skills to advance’s CORD critical work.Alice also serves on the board of the Wilson Disease Association (WDA) and as a Patient Partner with University Health Network to offer insights from the patient/caregiver perspective on a variety of projects to improve healthcare delivery and outcomes for patients.

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.

Hilary Wong-Rieger

Social Media & Office Coordinator

Hilary graduated with a BA in Sociology from the University of Guelph. She enjoys the collaboration with our stakeholders and patient groups, tending to their administrative requirements. Hilary is consistently available to provide support, address queries, and adeptly manage various tasks. She is important in maintaining our engaging online presence and ensuring seamless operations. Hilary is also a valuable contributor to our event planning efforts. She has been involved with CORD since 2012.