Mission - History - Team
Mission of the Canadian iRARE Centres
The Canadian iRARE Centres’ mission is to improve the lives of Canadians living with a rare disease by informing and supporting them, their caregivers, their families, and their health professionals.
The Canadian iRARE Centres offer the following services:
History
The first iRARE Centre (a rare disease information and support centre) was established in Quebec by the Regroupement québécois des maladies orphelines (RQMO) (Quebec Coalition of Orphan Diseases). Since 2010, it has helped thousands of Quebecers affected by a rare disease. It was the only such service in Canada.
Gail Ouellette, the co-founder of the RQMO, dreamt of establishing iRARE Centres in other Canadian provinces. The United States and most countries in the European Union have organizations offering such a service.
In 2023, the RQMO obtained funding for one year from the federal government through it’s “Community Services Recovery Fund” (managed by United Way Canada) to set up a platform to centralize the necessary information and resources needed for a Canada-wide service.
The first Canadian iRARE Centre was launched in June 2024 with the hiring of an information agent who can answer requests for any rare disease from Canadians outside of Quebec. In August 2024, in partnership with CanPKU+ (a Canada-wide organization for phenylketonuria and other related disorders), the organization “Canadian iRARE Centres/Centres iRARE canadiens” obtained its incorporation as a not-for-profit organization at the federal level. Our hope is to establish at least four (4) iRARE Centres across Canada.
Canadian iRARE Centres/Centres iRARE canadiens works closely with the RQMO to benefit from the long experience of its Quebec iRARE Centre. Residents of Quebec can continue to contact the RQMO’s iRARE Centre for information and support for their rare disease.
Canadian iRARE Centres are also a part of the Canadian Rare Disease Network (CRDN) and participates in Pillar #3 of this initiative: “Care, Support & Empowerment”.
Team
Board of Directors
Gail Ouellette, PhD., is a genetic counsellor. She co-founded and was president (2010-2023) of the Regroupement québécois des maladies orphelines (RQMO)/Quebec Coalition of Orphan Diseases. She established the RQMO’s iRARE Centre in Quebec. She is a member and co-chair of the Implementation Advisory Group (IAG) for the National Strategy for Drugs for Rare Diseases (co-chair from October 2023 to November 2024).
John Adams is a patient health advocate and management consultant. He is President & CEO of CanPKU+ and Chair of the Board of Directors of the Canadian Best Medicines Coalition non-profit. He is a survivor of a rare cancer and has family members who are or were affected by rare diseases. He is a member of two Health Canada advisory committees: the Implementation Advisory Group (IAG) for the National Strategy for Drugs for Rare Diseases and the Multi-Stakeholder Steering Committee on Drug Shortages.
Joanne Koskie is an advocacy engagement specialist with a background in healthcare communications and public relations. She has supported the advocacy efforts of many patients, caregivers, and healthcare providers, with a focus on improving access to medications for rare diseases. In addition to the Canadian iRARE Centres, Joanne has volunteered with a number of rare disease patient groups, including serving on the Board of Directors of the Canadian Organization for Rare Disorders.
Our information agent
Ms Amy McNeill answers the requests made to our iRARE Centre from Canadians outside of Quebec. She has a BSc. Honors in Molecular, Cellular and Developmental Biology from the University of Alberta. She has volunteered in peer support groups and has had an introductory course to genetic counselling.
She is supported by Gail Ouellette, genetic counsellor, who has experience in research (molecular genetics, gene discovery), clinical experience in genetic counselling, and first-hand experience with the Quebec iRARE Centre.
Many thanks to the RQMO team in Quebec who supports the expansion of its iRARE Centre to the rest of Canada.