ALSP Community &
Resources
ALSP is a rare disease,
but you are not alone.
Connect with the ALSP community – patients, families, caregivers, researchers and patient advocacy organizations – for support, education and to share your story.
ALSP, Leukodystrophy and Rare Disease Patient Organizations
Upcoming Community Engagement Events
April 2025 American Academy of Neurology Annual Meeting | April 5th - 9th
World Orphan Drug Congress | April 22nd - 24th
June 2025 Sisters' Hope Foundation Patient-Focused Drug Development Meeting | June 20th 2025
2025 ALSP Community Conference | June 21st
United Leukodystropy Foundation's Scientific Synposium and Family Conference | June 26th - 28th
For more information on ALSP, click to open a Guide for Understanding ALSP.
If you are a caregiver or family member and are looking for ways to support your loved ones with ALSP and build a care team, click to open an ALSP Guide for Caregivers and Family Members.
Stay Informed
Still have questions? We know that living with ALSP requires support and access to up-to-date information. Contact us to learn more about the latest research, tools, resources, and events.