The Mitchell Riley Foundation funds research into Mitchell Riley syndrome and supports the small, scattered community of families living with it — connecting patients, clinicians, and researchers across the world.
Mitchell Riley syndrome is a rare genetic condition that affects a very small number of people worldwide. Because so few cases have ever been documented, families often face diagnosis, treatment, and daily care with little established medical guidance to draw on.
That scarcity of shared knowledge is precisely the gap this foundation exists to close — by funding the research that helps clinicians understand the condition, and by connecting the families living with it so no one has to start from zero.
Everything the foundation does falls into one of two categories — pushing research forward, and making sure families aren't navigating this alone.
We award grants to researchers studying Mitchell Riley syndrome and related genetic conditions, and help connect scattered case data into something clinicians can actually use.
We provide education, connection, and direct assistance to patients and families, guided by written, need-based criteria applied equally to every applicant.
This foundation began the way most rare-disease organizations do: with a family searching for information that didn't exist yet, and a community that hadn't been built.
We founded The Mitchell Riley Foundation to change that — for the families living with this diagnosis today, and for the ones who will receive it after them. Our board includes researchers, clinicians, and advocates independent of any one family, so every decision we make serves the whole community, not any single case.
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