Yaya Foundation

The Yaya Foundation for 4H Leukodystrophy is the only organization in the world

dedicated to fighting on behalf of people affected by 4H (POLR3-Related)

Leukodystrophy. Founded by a group of parents of children affected by 4H

Leukodystrophy who were dismayed at the lack of available therapeutic alternatives for

their children, the Yaya Foundation’s mission is to accelerate the discovery of therapies

and cures that will enable people affected by 4H to live better, longer lives and to

provide educational and emotional support to affected families.


The Yaya Foundation advances its mission via its 4H Leukodystrophy Collaboration

Network (4HLCN), a global research collaborative convened by the Yaya Foundation

and comprised of patients, families, researchers, and clinicians working together to

accelerate discovery of therapies that will help people affected by 4H Leukodystrophy.

The 4HLCN works together as a community to identify and prioritize the highest impact

research, find the best people in the world to conduct that research, execute studies,

and rapidly disseminate and build upon findings.


The Yaya Foundation and the 4HLCN recently announced the launch of the 4H

Leukodystrophy Data Collection program and the initial version of the 4HLCN

Research Roadmap.


For more information, visit https://yayafoundation4hl.org


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