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 »
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 …
https://us02web.zoom.us/j/89702283247?pwd=azFUYkV0YVJxVnFkOEtvSTNZMmkxUT09
https://us02web.zoom.us/j/84341309797?pwd=WnE0S3BFYkdNZ1N0L1lVSEdmQy95QT09
Join us for an educational and discussion webinar focused on recognizing Caregiver Burnout and ways to take care of yourself - as you continue to take care of your loved one with leukodystrophy. Panelists: Marla Chapleau, mother to Aiden affected by MLC David Flores, father to Joshua affected by 4H Margaret Halter, wife to John …
