Resources and Support

FINDING YOUR
COMMUNITY

Resources and Support

FINDING YOUR
COMMUNITY

Support from Advocacy Organizations
Support from Advocacy Organizations

An advocacy organization has been there for us since the beginning. They have massively supported me, and Alfie has met some lovely friends through it as well.
Anna Rowell
ALD caregiver
An advocacy organization has been there for us since the beginning. They have massively supported me, and Alfie has met some lovely friends through it as well.
Anna Rowell
ALD caregiver

ALD Advocacy and Support Organizations

You are not alone on your ALD journey. Beyond your care team, there is an entire ALD community, including advocacy organizations who are here to help. These organizations can provide you with ongoing support and resources.

Explore the organizations below for more information:

Global Leukodystrophy Initiative

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.

World Leukodystrophy Alliance

The World Leukodystrophy Alliance brings together like-minded organizations to improve the quality of life for those with leukodystrophies.

ALD Connect

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

Aidan Jack Seeger Foundation

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.

European Leukodystrophy Association International

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.

bluebird bio, Inc. is not responsible for the content provided by third party sites, nor does bluebird bio, Inc. endorse the content of these sites. This is not a comprehensive list of resources and it is provided for reference only.

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