Our Work
The work of the CRDN focuses on three interconnected research-to-care pillars that span the patients’ needs from diagnostics and registries to innovative therapies, to care, support, and empowerment.
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Explore the Pillars of Our Work:
The network aims to advance precision diagnostics to reduce the time it takes to identify rare diseases and facilitate quicker access to appropriate care and support. It will also be actively involved in enabling and supporting patient registries that create centralized databases that not only contribute to research but also provide a valuable resource for patients, caregivers, and healthcare professionals seeking information and support. The Diagnostics & Registries pillar is divided into two activities: In-Depth Disease Characterisation and Undiagnosed Diseases Program (UDP).
The network will support the exploration of treatment possibilities for RD by encouraging both pharmacological (new drugs and repurposed existing agents) and non-pharmacological innovations, recognizing that holistic approaches, including medical devices, therapeutic techniques, and lifestyle interventions can be instrumental in enhancing overall well-being. It is committed to enabling transformative clinical trials for these diverse treatment modalities, ensuring comprehensive and personalized care for all and supporting efforts to establish optimal care pathways. The Innovative Therapies pillar is divided into two activities: Early Development of New Therapies (incl. non-pharmacological ones); and Clinical Trials.
The network recognises the multi-dimensional needs of rare disease patients and their families, and is dedicated to establishing a framework that not only delivers essential, coordinated medical care but also extends support that is deeply rooted in the familial and community context. The emphasis on family and community-centered care and support underscores the network’s commitment to building a supportive ecosystem that acknowledges the pivotal role and broader needs of families and communities, while helping to empower individuals who live with rare diseases. The Care, Support & Empowerment pillar is divided into two activities: Care Management; and Family & Community-Centred Care & Support.
The three pillars will be supplemented by cross-cutting priorities that are present throughout all network activities and are vital to our commitment to improving the health and well-being of children and adults with rare diseases. These priorities are currently envisioned to focus on topics related to patient partnerships and co-creation; capacity building; equity, diversity, inclusion, and accessibility (EDIA); data and platforms; knowledge mobilization (KM) and impact assessment. The specific cross-cutting priorities will be identified and coordinated collaboratively.
More information on the pillars and priorities will become available as working meetings take place throughout 2024. If you are interested in becoming a member of the CRDN and getting involved in its work, please submit an Expression of Interest in Membership here.