We are excited to be part of the family conference June 20-June 23, hosted by the United Leukodystrophy Foundation open to families and patients to meet with others living with a Leukodystrophy as well as scientists and doctors actively involved in the diseases. There will be many topics covered but more importantly an opportunity for us H-abc patients and families to get together. Separate meeting for scientists and advocacy groups will be held on Thursday June 22.
The Foundation to Fight H-ABC is hosting a separate half day meeting during the conference and have asked both CHOP and UMass, both of which are working on treatments, to speak and answer questions that you may have about the research and also how to help. This is open to anyone across the globe. Assistance for costs will be available by the ULF for those who qualify. Nominal registration fee will cover food and event activities. Go to the ULF link to learn more: