Missed the 2022 Family Conference or want to see more?

Click here to view the 2022 Family Conference Playlist on our YouTube Channel.

Save the Date for 2023

June 23 and 24
Eaglewood Resort and Spa
Itasca, IL (near 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.

Cost to attend in person is $25 per adult and $10 per child, under the age of 18. The fee covers entry to the event and eight meals at the venue.  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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