A 501(c)(3) nonprofit organization

Fewer than a handful of people worldwide share this diagnosis.
None of them should face it alone.

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.

Every known point on this map is a real family. We're building the connections between them.
Ultra-rare
Diagnosed in only a handful of people worldwide, making shared knowledge scarce.
Genetic
Caused by a specific gene variant, identified through modern sequencing.
Understudied
Its rarity means little dedicated research funding exists — until now.
What is Mitchell Riley syndrome?

A condition rare enough that most doctors will never see a second case.

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.

Our Work

Two efforts, one goal

Everything the foundation does falls into one of two categories — pushing research forward, and making sure families aren't navigating this alone.

RESEARCH

Fund the science that doesn't yet exist

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.

  • Seed grants for early-stage research
  • Support for natural history studies
  • Connecting labs and clinicians across borders
FAMILY SUPPORT

Make sure no family starts from zero

We provide education, connection, and direct assistance to patients and families, guided by written, need-based criteria applied equally to every applicant.

  • A network connecting families worldwide
  • Plain-language resources on the condition
  • Assistance programs open to all who qualify
Why We Exist

Started by a family who couldn't find one.

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.

— The Board of Directors
Get Involved

Three ways to help

Donate

Every gift funds research grants and family assistance programs directly.

Give today →

Connect us with a family

Know someone affected by Mitchell Riley syndrome? Help us reach them.

Make an introduction →

Partner with us

Researchers, clinicians, and institutions — we want to hear from you.

Get in touch →