ASL

FRENCH LOWE SYNDROME ASSOCIATION

Member since 31/01/2022

https://www.syndrome-lowe.org/

Committed contributor

ASL has sponsored:

1 project

Visit the webpage

ASL commitments

Health

To relieve the suffering and isolation of families, the ASL team decided to bring this rare disease out of oblivion (according to the World Health Organization, a disease is said to be "rare" when it affects less than one person in 2000). To do this, it has set itself three main objectives: welcoming, guiding, supporting and advising the families of patients, making Lowe's syndrome known to the general public and doctors and promoting research to overcome the disease.

About us

The Lowe Syndrome Association, created in June 1994, is governed by the Law of 1901. It was recognized as charitable by order of the prefect of Seine-Saint-Denis on May 22, 2003. It celebrated its 20th anniversary in Disneyland Paris © in 2014. Non-profit, it brings together the families and friends of patients suffering from Lowe's syndrome. The members of its board of directors are all volunteers, parents of children affected by the disease. It is made up of an office and a scientific council chaired by Professor Rémi Salomon (Necker Hospital). It has nearly 200 members and brings together nearly 40 families of patients.