The CTX Alliance is hosting their first international scientific meeting exclusively dedicated to cerebrotendinous xanthomatosis (CTX). Their goal is to catalyze much-needed international basic research and clinical collaborations for CTX and to advance our understanding for improved outcomes for CTX patients and their families. Meeting agenda features lectures and discussions from renowned CTX researchers, medical …
We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …
How To: Community Awareness Events The Power of the Community Join us as we illustrate and expand on the many ways you can spread leukodystrophy awareness and raise funds for the cause! Energize your local community by organizing an awareness event. Dr. Mousumi Bose, a ULF Board of Directors Member, rare disease researcher, and a …
We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …
The ULF is proud to be an exhibitor of the 2023 National Organization for Rare Disorders, Inc. (NORD) Breakthrough Summit taking place in Washington, DC on October 16-17. This conference is one of the largest multi-stakeholder events in the #RareDisease community, connecting leaders with industry experts for two days of inspiring sessions and networking opportunities. …
Kendra Scott Shop online: Wednesday, 10/18 & 10/19 and Kendra Scott will provide a 20% giveback to the ULF of all orders placed with Promo Code: GIVEBACK-FAHUE Through the use of natural materials, including genuine stone and shell, Kendra Scott creates quality, affordable luxury products that make fashion and its trends truly accessible.
We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …
Please join us on November 8, 2023 at 1 PM Eastern / 12 PM Central / 11 AM Mountain / 10 AM Pacific! Fill out the form below to register, and you will receive a confirmation email with the Zoom link to join us on November 8.
We look forward to having you join us! Join us as we connect with other caregivers to discuss ways on coping with common stressors that caregivers face on a regular basis. This is a safe, non-judgemental environment that we welcome conversations and support within the leukodystrophy community. Hosted and Moderated by Marcie Flores The sessions …
Please register for a Vigil Neuroscience hosted community webinar to acknowledge a year of progress in ALSP. This webinar will provide updates on the IGNITE and ILLUMINATE studies and include a special presentation from expert, Dr. Florian Eichler, on adult leukodystrophies (ALSP) and the importance of leveraging the patient voice to help advance research and …
Vigil Neuro Community Webinar: A Year of Progress in ALSP Read More »
