Providing education, support, advocacy, and promoting research
for CTX patients, their families, and medical professionals
who treat and study this rare disease.
(in-person & virtual options available)
For many years, the CTX community has participated in, and benefited from, the annual United Leukodystrophy Foundation Family Conference. 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.
The CTX Alliance is grateful for this continued opportunity presented by the ULF. We are also excited to help support and organize CTX specific breakout sessions during this year’s ULF Family Conference scheduled for June 23rd – 25th in Chicago.
If you are newly diagnosed, looking to connect with fellow CTX families, and/or would like more information on things that are happening with our newly formed CTX Alliance, join us this summer! For the latest information about the conference, visit the ULF’s webpage.
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