The Yaya Foundation for 4H Leukodystophy

Launched #4HLFamilies, comprised of programming and supportive resources for families affected by 4H Leukodystrophy. #4HLFamilies aims to connect affected families so that they can share experiences and best practices and provide emotional and educational support for one another, provide educational resources for families and their healthcare providers in order to streamline and improve the standard of care for patients affected by 4H Leukodystrophy, and to share patient stories to raise awareness of the disease. The Yaya Foundation held several videoconferences attended by families and children affected by 4H and began creation of a suite of educational resources for newly diagnosed families and their healthcare providers aimed at streamlining and improving their care.

Founded and launched the 4H Leukodystrophy Collaboration Network (4HLCN), a global, cross-functional collaboration of patients, families, researchers, and clinicians dedicated to advancing therapeutic discovery that will enable people affected by 4H (POLR3-Related) Leukodystrophy to live longer, better lives.