The Global Leukodystrophy Initiative brings together clinicians, researchers, and advocacy groups to focus and improve clinical care and research with services including Centers of Excellence, Family Conferences and Referral Networks.

ALD Connect is focused on improving health outcomes for patients with X-linked ALD through empowerment, awareness, and scientific advances.

ALD Alliance (formerly Aidan Jack Seeger Foundation) works to address the need for newborn screening for Adrenoleukodystrophy, and to support and encourage families affected by ALD through information, awareness, and funding of research.

Run by parents and patients affected by leukodystrophies, ELA International represents national European Leukodystrophy Associations with an aim to fund research, support families, raise awareness, and develop international exchanges on behalf of the leukodystrophy community.