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 Air’Ondine : vers un traitement d’une maladie rare, le Syndrome d’Ondine

Treating Ondine’s curse

Air’Ondine: working towards a treatment for a rare disease: Ondine's curse

The Air Liquide Foundation provides support to Inserm and Robert Debré Hospital in Paris for their research project on the development of a pharmacological treatment for the rare disease known as congenital central hypoventilation syndrome (CCHS), or Ondine's curse.

Ondine’s curse

This rare genetic disease was discovered in 1976 and is diagnosed within the first few days of birth. One in 200,000 children worldwide suffer from this disease. Ondine’s curse is characterized by a significant decrease in breathing during sleep, which can result in the total cessation of breathing. Until now, patients suffering from Ondine’s curse have required mechanical ventilation for the rest of their lives during sleep. Patients with the most severe form of the disease require round-the-clock ventilation. These patients also suffer from other symptoms, including highly varying degrees of cognitive impairment. Their health and their quality of life are therefore severely affected by the disease.

 

A pre-clinical project to develop a treatment

Molecules that may be used as a potential treatment for Ondine’s curse have already been identified in vitro. Dr. Jorge Gallego and his team now would like to perform testing on mice to assess the effectiveness of these molecules and to evaluate their respiratory and physiological effects (cardiac activity, temperature, etc.).

If one or more of these molecules proves to be effective, a clinical trial will be considered

The Air Liquide Foundation's involvement

La Fondation Air Liquide contribue à hauteur de 50 000 euros à l’acquisition de l’équipement nécessaire au projet de recherche, notamment des ventilateurs de respiration spécialement conçus pour ces travaux et des capteurs médicaux.

The Air Liquide Foundation contributes to the purchase of the equipment needed for the research project, in particular mechanical ventilators that were specifically designed for this research, and medical sensors. The grant amounts to €50 000.

PROJECT IDENTITY

  • Project Initiator: National Institute for Health and Medical Research (Inserm) – Robert Debré Hospital
  • Location: Paris, France
  • Year of support: 2015
  • Air Liquide Sponsor: Marc Lemaire, Air Liquide Healthcare International, Paris-Saclay Research Center