The Institute was set up under the 1901 law concerning associations, as a health establishment on a human scale, with three statutory missions:
- Care, through the consultations it provides;
- Research, through its research management;
- Training for families and professionals.
In 2011, the Institute decided to improve patient management by linking its consultation activities to the Paris Saint-Joseph Hospital Group in the 15th quarter of Paris, in the framework of a health cooperation group.
The Institute is also a member of several European consortia, including Horizon 21, which brings together European doctors with expertise in the management of patients with intellectual disabilities suffering from aging-related diseases, and 1,000 adult patients with Down syndrome recruited in five European countries. The aim is to understand why some patients develop Alzheimer’s syndrome and others do not.
The Institute is governed by a 12-member managing board with Mr Jean-Marie Schmitz as its president. The President of the Jérôme Lejeune Foundation, Mr Jean-Marie Le Méné, is, by rights, the Vice President of the Institute.
Mr Grégoire François-Dainville has been the General Director of the Institute since September 1, 2014.
For the selection of research projects, the Institute is guided by a scientific council of 24 independent experts and the Jérôme Lejeune Foundation. The president of this council is Professor Yann Hérault, a CNRS research director and Director of the Mouse Clinical Institute at Strasbourg.
The Jérôme Lejeune Institute is also a member of the Fédération des établissements sociaux, sanitaires et médico-sociaux du secteur privé non lucratif (FEHAP; the Federation of Social, Health and Medicosocial Establishments of the Private Not-for-Profit Sector).