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Mario e Luce
Our Foundation in a nutshell

"Un aiuto per Mario e non solo"

Fondazione CHOPS Malattie Rare was established on May 13th 2023, after a successful crowdfunding campaign in Italy “Un aiuto per Mario e non solo”.

Our mission

Driving and accelerating targeted therapies for CHOPS Syndrome, an ultra-rare and multi-organ neurodevelopmental genetic disease.

Our vision

Dreaming of a world with early diagnosis and treatment for rare genetic diseases like CHOPS.

CHOPS Syndrome

It’s never too late. With children. Their whole lives are the future!

Raising awareness and fundraising

We communicate our stories in order to build engagement, we organize events around Italy.


We fund basic and applied research to rapidly find a treatment for CHOPS syndrome.


We support the exchange of information amongst doctors, researchers and families to help with the research path.

Sense of community

We build connections amongst CHOPS families around the world.