Our actions


Our actions

Raising awareness
of rare


With over 8’000 rare diseases worldwide, three-quarters of which are pediatric, and 80% being of genetic origin, the Foundation is actively leading campaigns to raise awareness, particularly focusing on Sanfilippo disease.

A rare disease is defined as a condition affecting fewer than one person in 2’000 necessitating special efforts for treatment. These diseases can be genetic, infectious, autoimmune, degenerative, or tumoral, and they are often chronic, disabling, and potentially life-threatening. While most cases manifest early in life, some may remain undetected for years.

The most vulnerable are children, with three out of four rare diseases posing risks to their lives.

rare disease day

Since 2008, International Rare Disease Day has been observed annually on the last day of February. Its objective is to raise public awareness about rare diseases and their impact on patients and their families.

Race for Gift 2024

Pour la huitième année, la Fondation participe à la course solidaire Race For Gift qui aura lieu le 2 juin 2024 à Genève. Cette année, les fonds récoltés seront alloués au soutien aux familles d’enfants Sanfilippo. 

International Rare Disease Day

A l'occasion de la Journée internationale des maladies rares, plusieurs actions de visibilité ont été menées.

Charity Gala at the Théâtre de Carouge

Organisée autour du spectacle Une journée particulière avec dans les rôles principaux Laetitia Casta et Roschdy Zem.

3rd International Conference

La 3e Conférence Internationale organisée par la Fondation Sanfilippo Suisse s'est tenue les 12 et 13 novembre 2020 en visio-conférence.

Explore all our events

World Sanfilippo Day is observed annually on Novembre 16th, providing an opportunity to raise awareness of this rare disease.