Newly Diagnosed

A 4H Leukodystrophy diagnosis comes with many questions and emotions. Here’s the good news: You don’t have to figure out everything at once. And you don’t have to do it alone.

You are now part of the Yaya Foundation family: a network of parents, researchers and other professionals who are committed to supporting you and driving toward the discovery of greater understanding and effective therapies. Here you will find a supportive community, answers to your questions and a wealth of resources to help you through each step.

To help you get started, download this Letter to Providers to help guide your first visits with your family’s new care team members.

To learn more about 4H Leukodystrophy, download the 4H Leukodystrophy Disease Overview PDF.

Please complete the form below and we’ll be in touch about how you can:

Connect with providers familiar with 4H leukodystrophy and with other families living with 4H.
Stay informed on the latest news and research related to 4H leukodystrophy.
Make a difference by sharing your 4H story and advancing research by participating in our data collection program.



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