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2021 Family Conference

Check out the recordings from the Conference here! Thank you for joining us virtually this year!

Thank you for growing with us during this year’s Family Conference! Videos of the sessions are posted in a YouTube playlist.

A resounding thank you to our partner organizations this year for providing MLD and Krabbe specific content: Cure MLD, the Calliope Joy Foundation, and KrabbeConnect.


The ULF Family Conference is an annual event where affected families can access the world’s top leukodystrophy physicians and researchers – outside of the restrictions of insurance and the hospital setting. Held over two days, the Conference aims to provide the latest scientific information to keep families informed on advances in the field but also guide families on topics that will improve their overall quality of life while living with a leukodystrophy. The Conference is an invaluable experience geared towards the whole family: affected individuals, parents and caregivers, spouses, siblings, extended family, friends, and anyone else in the support network.

When held in person, the cost to attend when held in-person is $25 per adult and $10 per child under the age of 18. This fee covers the entry to the event, as well as eight meals provided at the venue. The attendees are responsible for securing their hotel room(s), and making their own travel arrangements. Scholarships are available to families who are newly diagnosed, or are in financial need. When held virtually, there is no cost for families to attend but donations are always welcome!

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