Organizations Supporting Rare Disease Patients

There are numerous organizations dedicated to supporting rare disease patients at the national and international levels. Some of the key organizations include:

Canada

Canadian Organization for Rare Disorders (CORD) – A national network advocating for rare disease policies, research, and patient support.

Rare Disease Foundation – Focuses on research and patient support initiatives.

Health Canada’s Office of Rare Diseases – Works on regulatory frameworks and policies for rare diseases.

United States

National Organization for Rare Disorders (NORD) – Provides advocacy, education, and research funding.

Global Genes – Empowers patients and organizations in the rare disease community.

EveryLife Foundation for Rare Diseases – Works on policy initiatives and awareness campaigns.

Global Organizations

EURORDIS (European Organization for Rare Diseases) – Represents rare disease patients in Europe and beyond.

Rare Diseases International (RDI) – A global alliance of rare disease organizations advocating for better policies worldwide.

International Rare Diseases Research Consortium (IRDiRC) – Focuses on rare disease research and treatment development.

United Nations Rare Disease Initiative – Works towards global recognition of rare diseases within healthcare policies.

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