Main aim of the charity

Family support : DEBRA supports families providing them information on medical care, research….we also give them to meet once or twice a week so that they can exchange on their daily life and so that they do not feel alone. A retired nurse is part of our Board and goes home of the members to train how to make the cures Research : We support research so that treatments (to relieve pain or itching for example) or a cure can be found Awareness and advocacy : We work to understand the issues that have (or have the potential to have) a negative impact on families who live with EB. We then take steps to highlight and explain these issues to key decision makers and to encourage positive action to bring about improvements. We make the best so that EB can be better known We also work with other organizations across the World (Eurorids : European rare diseases organization, Debra international that joins debras from more than 50 countries)

How the employee got involved and why

I met Angelique, Maelle's mom, about 2 years ago. Because we live in the same village and our girls were in the same school. I was immediately touched by Maëlle's disease and wished to invest myself in the association

What work does the employee do for charity?

I am helping DEBRA with the communication strategy. I also help debra with social medias development. I participate to specifics events as for example next year The Heroes Of Lyon, which will take place the 28th of june 2020 (just in case you want to participate) 