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2021 Family Conference

Click Here to View the 2021 Agendas
(Subject to Change)
Registration required. Register using the box to the right on this page, the box below, or here.
Frequently Asked Questions
Session Summaries

It is with an over abundance of caution that we will be hosting our annual Family Conference virtually again this year, Friday and Saturday, June 25th and 26th. Registration is open to all who wish to attend, at no cost. Donations are always welcome, but are not mandatory to participate! Join us for as many sessions as you want – don’t worry, they will also be recorded and available for viewing on YouTube in early July.

This year, the ULF is thrilled to partner with Cure MLD, the Calliope Joy Foundation, and KrabbeConnect in presenting half-day sessions dedicated to MLD and Krabbe type-specific content. Their detailed agendas are included in the link above.

Please use the registration box below to sign up for the Conference, or click here.

Registration welcome boxes will be shipped to those who include their mailing address within the United States! These boxes will include helpful tips and information from our partner organizations and sponsors, and a few other goodies, while supplies last and one per household. Households identifying themselves as MLD or Krabbe families will receive additional goodies, courtesy of Cure MLD, the Calliope Joy Foundation, and KrabbeConnect. Register early to ensure you receive one!

Register Here:


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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