Resources
LCC/Labrune Syndrome Community Member Sign Up
Patient/Parent/Caregiver Contact Registry
The information from this form will be used to distribute information and keep interested parties updated within the LCC/Labrune Syndrome Patient/Parent/Caregiver Community.
Global Genes
LibRAREy
The LibRAREy offers a searchable database for resources available to the rare community.
Alex – The Leukodystrophy Charity
Alex TLC serves the United Kingdom community affected by leukodystrophies.
United Leukodystrophy Foundation
The United Leukodystrophy Foundation is chocked full of information related to all types of leukodystrophies and the efforts being made to find treatments and cures.
Global Leukodystrophy Initiative – Clinial Trial Network
The GLIA-CTN is a consortium of scientists, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies.
National Organization for Rare Disorders
NORD was first national nonprofit to represent all individuals and families affected by rare disease. Today we’re the only organization working at the intersection of care, research, policy and community for all rare diseases.