ALD Hope Joins the Global ALD Advocacy Network

Connecting ALD communities across borders through collaboration, shared knowledge, and advocacy.

We are proud to share that ALD Hope has joined the Global ALD Advocacy Network, an initiative led by ALD Connect that brings together ALD organizations, advocates, and community leaders from around the world.

The network was created with a shared belief: while our communities may be separated by geography, language, and healthcare systems, the challenges faced by individuals and families affected by adrenoleukodystrophy (ALD) connect us. By working together internationally, advocacy organizations can share knowledge and resources, learn from one another, amplify the voices of families, and strengthen efforts to improve awareness, diagnosis, access to care, research, and treatment.

A Growing Global Community

The growing network includes advocates and organizations representing communities across Canada, the United States, Latin America, Europe, Australia, and Asia, including ALD Hope, ABCD1 Foundation, ALD Brasil, Alex TLC, Asociación ALD-X España, Leukodystrophy Australia, Manus Alba, Remember the Girls, Fundación Lautaro Te Necesita, and representation from South Korea.

For ALD Hope, joining this network is an important step in ensuring that the experiences and needs of the families we serve are part of the global ALD conversation. It also allows us to learn from organizations that have spent years advancing ALD advocacy in their own countries and to share the knowledge, resources, and experiences we have gained through our work in Canada and internationally.

Why Global Collaboration Matters

Global collaboration is particularly important in a rare disease such as ALD. No single organization, country, researcher, or healthcare system can address every challenge alone. Progress becomes stronger when patient organizations, clinicians, researchers, industry partners, and families can exchange knowledge and work toward common goals.

Members of the Global ALD Advocacy Network will come together during the 2026 ALD Connect Annual Meeting & Patient Learning Academy in Salt Lake City, Utah, creating an opportunity for advocates from different parts of the world to meet, exchange experiences, identify shared priorities, and build stronger international connections.

Hope Without Borders

For ALD Hope, this is about much more than joining another network. It is about helping build a world in which where a child is born does not determine whether ALD is detected early, whether a family can find reliable information, or whether someone affected by ALD can access knowledgeable care and emerging treatments.

We are grateful to ALD Connect for bringing advocates together and to every organization and individual contributing their experience and voice to this growing global movement.

One global network. One shared mission. Hope without borders.

Connecting. Collaborating. Advocating globally.