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
rare diseases
identified worldwide
affect
children
have a
genetic origin
people affected
worldwide
Raising awareness
of rare
diseases
Campaigns
The Foundation is running an active campaign to raise awareness of rare diseases, and in particular Sanfilippo disease.
A rare disease is defined as a condition that affects fewer than one person in 2,000 and requires special combined efforts to treat. There are over 8,000 listed rare diseases. Genetic in origin in 80% of cases, the other causes are infectious, auto-immune, degenerative or tumoral. They are usually chronic, disabling and can be life-threatening. Most cases appear at an early age, while others remain hidden for many years.
Events
The Foundation takes part in or organises a number of events throughout the year to raise funds for research projects.
Événements
13 November 2025
4th International Sanfilippo Conference
On 13 and 14 November 2025, Geneva will host the world conference on Sanfilippo disease.
25 May 2025
Race for Gift 2025
Join us for the 10th edition of the Race for Gift. Let's run together to break new records and carry our message of hope high!
28 February 2024
International Rare Disease Day
To commemorate the International Rare Disease Day, a number of visibility campaigns were organized.
12 October 2023
Charity Gala at the Théâtre de Carouge
Organised around the show Une journée particulière starring Laetitia Casta and Roschdy Zem.