ALD Connect Attends Chan Zuckerberg Initiative Science in Society: Rare As One Network 2025 Meeting

This week, we had the honor of participating in the Science in Society: Rare As One Network 2025 Meeting, hosted by the Chan Zuckerberg Initiative (CZI). As a Rare As One grant recipient, ALD Connect joined a network of patient leaders, scientists, and clinicians working together to accelerate research and improve outcomes for people living with rare diseases.

The meeting brought together organizations from across the rare disease space to strengthen connections, share insights, and explore new ways to collaborate. Discussions focused on how to grow stronger as patient-led organizations, learn from one another, and build cross-disease partnerships that help all communities move forward. For ALD Connect, it was a meaningful opportunity to represent the adrenoleukodystrophy community—highlighting our progress, sharing our challenges, and helping raise awareness of what matters most to the families we serve.

The Chan Zuckerberg Initiative is a philanthropic organization founded in 2015 by Dr. Priscilla Chan and Mark Zuckerberg. Its mission is ambitious: to help cure, prevent, or manage all diseases by the end of this century. Through its Science program, CZI supports cutting-edge research and fosters collaboration between scientists, technologists, and patient communities. One of its major initiatives is Rare As One, which provides funding and support to patient-led rare disease organizations so they can drive their own research agendas and strengthen their communities.

ALD Connect was awarded a Rare As One grant in 2024. This funding has helped us grow our capacity, engage more deeply with our community, and play a more active role in advancing ALD research.

For the ALD community, being part of the Rare As One Network means greater visibility for our condition and more opportunities to be included in research and collaboration. It gives us a seat at the table where big ideas are being shared and acted upon. It also connects us with other rare disease organizations so we can learn from their experiences, share tools and resources, and work together to make meaningful progress.

We’re proud to be part of this network, and we’re grateful to CZI for supporting patient-driven science.