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Research support
We support research
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:
Dr Sophie

Research Director
1st class at Inserm,
co-director of the
Cochin Institute,
"Iron and Immunity" team
Pr Jamel

Faculty of Medicine
of Strasbourg
University of Strasbourg
Pr Nadia

Professor of Pediatrics,
Necker Children's
Hospital, Paris
Associate researcher in
Dr. Pierani's team
Pr Laurent

Professor of Genetics
at the University of Paris
and Coordinator of the
Reference Center
Rare Diseases
porphyria and rare
abnormalities iron
Dr Gaetan

Medical Genetics
Hospitalier Est, Bron
Pr Philippe

Professor of
Coordinator of the
Henri Mondor
Call for Proposals :

A call for proposals (CfP), is a mechanism set up by a financier for the award of a grant. The funder defines a problem and a framework; Applicants for funding are invited to submit a project within this framework and freely define the content of their project. The CfP serves to reduce the discretionary nature of the grant by ensuring greater transparency in the selection of the funded project.

The association launches its first call for tenders to support clinical & preclinical research. It will finance national and international research projects carried out in private and public institutions for € 15,000. The purpose of this funding is to help start a new project or to continue an ongoing project on:
   - the pathophysiology of pathologies related to mutations of the WDR45 gene
   - Molecular, biochemical and biological aspects underlying the problem related to autophagy related to WIPI4 protein
   - therapeutic approaches

It is downloadable guidance by clicking on the image below:

Deadline for filing: 1 June 2019
 Answer: end of June
Complete file signed by the applicant to send by e-mail to : 
The reception of the application will be confirmed by email.