Our actions
We aim to offer practical assistance to families with children affected by MPS III and are committed to continuing our efforts in advancing research into mucopolysaccharidoses (MPS) for which there is currently no cure.
SUPPORT FOR FAMILIES
The Foundation endeavors to provide practical support for children with MPS III and their families through:
- Initiatives to facilitate the education and integration of children with mucopolysaccharidosis into educational environments
- Comprehensive care for affected children throughout all stages of their lives
- Assistance and support for families during and after their child’s illness
Raising awareness
of rare
diseases
Campaigns
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.
international
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.
Événements
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
