The association aims to find a cure for this disease. This is to allow a better future for people with BPAN and their loved ones.
For this, it must finance scientific research. The work of a doctoral student costs on average between 35,000 to 50,000 euros per year depending on the laboratory. Studies on the mechanisms of the disease are needed with the ultimate goal of finding a cure. For that, several steps are required: globally the discovery of a molecule, the test on a laboratory animal, on a healthy subject then on a patient. Lastly, there are marketing authorizations for the medicine. Several years are therefore necessary. We can not afford to waste time.
The medical committee :
In order to optimize our action, the association is surrounded by a medical and scientific committee. The medical advisory committee consists of professors, doctors and members of the medical profession who have agreed to answer the requests of the association. Its role is notably to give an advisory opinion on tenders which will then be validated and financed by the association.
This committee is currently composed of 6 people: