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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.
Rare Diseases: Research, Care and Solidarity. A Concrete Commitment for the Future
📅 February 28, 2025 – International Rare Disease Day
📍 Sala Mattarella, Palazzo dei Normanni, seat of the Sicilian Regional Assembly, Palermo
💻 Conference in-person and online
Raising awareness and fundraising
We communicate our stories in order to build engagement, we organize events around Italy.
Research
We fund basic and applied research to rapidly find a treatment for CHOPS syndrome.
Collaborations
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.
Symposium CHOPS
On July 19 and 20, 2024, the Foundation promoted and organized the CHOPS symposium, which was held at the Children's Hospital of Philadelphia.
News and Events
Latest news and events
by Manuela Mallamaci/0 comments
CHOPS and Rare Diseases: the 2nd International Symposium comes to Milan
CHOPS Syndrome
It’s never too late. With children. Their whole lives are the future!
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