About CRDN

Uniting Canada’s rare disease community to advance care and research nationwide

Founded in 2023 and enabled by One Child Every Child, the CRDN is a pan-Canadian network that unites the country’s leading clinical, scientific, and patient expertise to improve the lives of the millions of children and adults affected by a rare disease across Canada. By bringing together all partners and mobilising the rare disease community, the CRDN aims to accelerate innovative scientific and medical advances, and improve standards of care across Canada for patients and their families.

Our Vision

Innovative care and research in Canada so that all patients and families affected by a rare disease are empowered to live their full potential.

Our Mission

Establish a growing network that works across geographies and disease boundaries to enable timely diagnosis and access to treatment, and facilitate best care, support and empowerment for patients and their families in Canada, ultimately enhancing their quality of life.

Our Values

Our values are guideposts and are not listed in any order, except for people first, a principle that is at the heart of CRDN’s activities and decision-making considerations.

People First

Prioritizing the well-being and needs of rare disease patients and their families in all decisions and activities.

Collaboration & Inclusivity

Encouraging strong partnerships and welcoming a diversity of views, including those of patients, caregivers, healthcare professionals, researchers, and others from across Canada and disease types to work together for the betterment of those with rare diseases.

Equity

Ensuring equitable access to resources, information, and support for all individuals affected by rare diseases, regardless of their background, location, or disease type.

Innovation

Embracing creative and forward-thinking approaches to advance research, diagnosis, treatment, care, support and empowerment of rare disease patients, families, and communities.

Excellence

Committing to conducting and supporting high-quality care and research and facilitating best care, support, and empowerment so that every patient and their families can live their full potential.

Empowerment

Committing to conducting and supporting high-quality care and research and facilitating best care, support, and empowerment so that every patient and their families can live their full potential.

Solidarity & Mutual Respect

Fostering a sense of unity and togetherness and emphasizing respect for the unique perspectives, experiences, and contributions of all network partners.

Our Equity, Diversity, Inclusion and Accessibility (EDIA) Statement

The CRDN is committed to cultivating and upholding a culture of inclusion, diversity, equity, and accessibility in every facet of the network and its initiatives. We greatly value the distinctive perspectives, lived experiences, skills, and knowledge of those in our community. We welcome the unique contributions of partners, patients, and community members, recognizing and respecting diversity in age, ancestry, culture, gender identity, physical ability, race, spiritual beliefs, sexual orientation, discipline, philosophy, and perspective. We continually strive to remove barriers and foster an accessible and inclusive environment where all individuals feel a sense of belonging. Together, we share our strengths to advance research, innovation, and care for the benefit of all people living with a rare disease.

Indigenous and Land Acknowledgement

The CRDN recognizes the importance of Indigenous knowledge, wisdom, and perspectives in the pursuit of our shared goals. We are dedicated to building meaningful relationships with Indigenous partners, listening, and learning from their experiences, and respecting Indigenous perspectives in our work for the betterment of all communities affected by rare diseases. We commit to upholding the principles of respect, humility, and reciprocity, guided by the understanding that the journey towards inclusivity and reconciliation is ongoing and requires collective effort. The work of the CRDN occurs from coast to coast and on the traditional, ancestral and unceded territories of many Indigenous peoples and nations. The CRDN acknowledges the profound and enduring connections that Indigenous communities hold with the land and waters we inhabit, and the non-human relatives, and we honour, recognize, and respect these nations as the traditional knowledge keepers and stewards of these lands where we work and meet.