Family Conference

Affected people, parents and caregivers, siblings, extended family, friends, care team members, advocacy representatives of all types are welcome and encouraged to attend.

Our Annual Conference, born in 1981 with a handful of Board members who hosted family meetings, now includes the world’s most prominent leukodystrophy scientists, clinicians, and industry partners who come together to discuss their efforts and commitment to innovation, advancing science, and informing, empowering, and treating patients who are affected by leukodystrophies.

This year’s conference highlights include:

The Family Conference, where ULF will host affected families dealing with leukodystrophy from around the world, will be held both in person and virtually. This will include education sessions related to leukodystrophy science and workshops that empower families and caregivers. Dr. Geneviève Bernard of McGill University, and Chair of ULF’s Medical and Scientific Advisory Board, will provide a layperson’s summary of the Scientific Symposium sessions. This is to ensure that families are updated on advances in the field. Attendees include affected individuals, parents, caregivers, siblings, and extended family members who are part of the support network. The research and medical community are also encouraged to attend.

The Family Conference will also host our annual Patient Advocacy Group Mini-Symposium which will be incorporated throughout the two-day Family Conference. This will enable leukodystrophy-specific advocacy groups to benefit from ULF’s research community and industry partnerships to add value to the sessions focusing on their type-specific leukodystrophy.