Grant: Planning and Dissemination Grant - Institute Community Support

Leukodystrophies are a group of rare, progressive, and often life-limiting genetic disorders that affect the white matter of the brain and nervous system. Individuals living with these conditions, many of them children, face challenges such as delayed diagnoses, limited treatment options, and poor access to specialized care. Families often experience isolation and a lack of coordinated support. The Canadian Association for Research Excellence in Leukodystrophies (CARELeuko) is a national network dedicated to improving care and research for those affected. CARELeuko unites healthcare professionals, researchers, patient advocacy organizations, and families to collaboratively address the challenges facing the leukodystrophy community. We have identified the most urgent gaps in research and care in Canada, establishing CARELeuko's core mission and values (recently submitted for publication in Neurology: Genetics). We are now planning to host a national CARELeuko Symposium, bringing together a diverse group of researchers, clinicians, and patient partners from across Canada to build new collaborations and implement CARELeuko's national vision and strategic plan. The symposium will feature scientific presentations, a poster session, panel discussions, and focused working groups. Topics will include advancing diagnosis and care pathways, facilitating data sharing, and expanding research opportunities for emerging therapies. Equally important, the symposium will continue to elevate the voices of people with lived experience and ensure their perspectives are embedded in all future initiatives. This event will help coordinate national efforts, strengthen clinical and scientific partnerships, and set in motion concrete plans to improve diagnosis, treatment access, family support, and long-term care. With support from CIHR, the symposium will be a key step toward a more connected, inclusive, and effective national response to leukodystrophies in Canada.