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Data Collection Info Session


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Data Collection Info Session

May 13, 2022 @ 11:00 am - 12:00 pm

Want to learn more about the 4H Data Collection Program? Join us for an info session on Friday, May 13th co-hosted by the Yaya Foundation and Rare-X, the data collection platform.

Whether you’re 1 of 60 families already enrolled or are thinking about participating, we look forward to answering all of your questions – big and small – and sharing what we’ve learned about trends that have showed up in the data so far! We’ll discuss the purpose and benefits of data collection, cover topics related to data privacy, and explain the importance of partnering with Rare-X.

Register To Attend


May 13, 2022
11:00 am - 12:00 pm


Via Zoom Link
Our Ethos

We are driven by the dream that one day, every child with 4H Leukodystrophy will have the chance to live a long, healthy life.

So we fight for these children by acting as a catalyst and a connector—bringing researchers together to accelerate the pace of discovery, while connecting families with vital education resources and emotional support.

We won’t stop until we find a treatment and, ultimately, a cure.

about yaya foundation

Give Hope to a Child with 4H Leukodystrophy

Your generous donation funds critical research into life-changing treatments and a cure for 4H Leukodystrophy, as well as vital programs that connect, support and empower families affected by this rare disease. All it takes is a simple click.