RARE ALLIANCE

Rare Alliance Canada (RAC) is a voluntary multi-stakeholder coalition coming together to take action on rare disease in Canada and in collaboration with international alliances. RAC brings together rare disease patient support groups, charitable and non-profit organizations, health organizations, clinical experts, researchers, emerging biotech enterprises, and industry partners. RAC will partner with health agencies, policy makers, and others to implement Canada’s Rare Disease Strategy.

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The five pillars of Canada’s Rare Disease Strategy

provide a framework for addressing the entire continuum of rare disease management from early diagnosis and prevention to best practice treatment and care to community engagement to access to best treatments, and comprehensive research.

Diagnosing the Rare:

Genetics, Genomics, Phenotyping, Undiagnosed Rare, Prevention

Treatment and Care:

Centres of Expertise, Treatment Guidelines, Best Practices, Care and Rehabilitation

Community Support:

Patient Groups, Community Resources, School and Workplace Support

Access to Therapies:

panCanadian Program for Drugs for Rare Diseases, Managed Access and Care Pathways

Research:

Genes, Animal Models, Drug Discovery, Clinical Trials, and Cures

Rare Alliance Canada is a unique partnership where the patient voice is truly respected and patients have an equal role with all other stakeholders. Leadership Team: Rare Alliance Canada is supported by the Canadian Organization for Rare Disorders with a leadership team and advisory board to be announced shortly.

Download Canada’s Rare Disease Strategy
Download Canada’s Rare Disease Strategy - Executive Summary

What We Do

Rare Alliance Canada (RAC) is a voluntary multi-stakeholder coalition set up to take action to implement Canada’s Rare Disease Strategy.

RAC brings together leading patient advocates, engaged patient organizations, caregivers (informal and formal), clinical and research experts, healthcare providers, policy makers, and industry partners (emerging and established).

Our collective mission is improving the lives of all those rare diseases, including timely diagnosis and prevention (when possible), access to best treatment and care (regardless of where the family lives in Canada), engagement with supportive community care (volunteer patient-based and established resources), fair access to appropriate therapies based on patient needs, and support for research that builds on Canadian expertise and promotes application.

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Rare Alliance Canada defines its roles vis-à-vis partners through the following activities:

Consensus Builder: Bringing together all relevant stakeholders to define priorities and address issues requiring collaboration and collective action

Facilitator: Providing platforms for multi-stakeholder and multi-jurisdictional collaboration on programs, projects and initiatives

Enabler: Linking Rare Alliance Canada to panCanadian and international programs and supporting resource development and investment in Canadian-linked initiatives

Neutral Forum: Bringing stakeholders together to address major and specific issues affecting rare diseases, and seeking to craft mutually beneficial and acceptable solutions.

Watch US IN CBC NEWS

Lee is one of 2.8 million Canadians who have a rare disorder. And “we” are Rare Alliance Canada, a partnership of those living with, finding cures for, and improving the lives of everyone affected by rare diseases. Lee is not looking for a hero. But together, we can be the wind beneath her wings.

Durhane Wong-Rieger President & CEO, Canadian Organization for Rare Disorders

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