2022 Family Conference

Thank you to everyone who participated in this year’s event!
We will be posting the recorded sessions as soon as possible.
Please check back here for updates!

Save the Date for 2023

June 23 and 24
Eaglewood Resort and Spa
Itasca, IL (Chicago)

Thank you to our presenting and sponsoring content partners!

CTX Alliance, Cure MLD, The Calliope Joy Foundation, Elise’s Corner, Krabbe Connect, and the Yaya Foundation


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 toward the whole family: Affected individuals, parents and caregivers, spouses, siblings, extended family, friends, and anyone else in their support network.

When held in person, the cost to attend is $25 per adult and $10 per child under the age of 18. This fee covers 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.

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