Sacha and the EBAE (debra France since June, 2011) :

In 1966 Sacha met a young journalist, Bernard Lasseigne. They lost touch and didn’t meet up for another 35 years. At the time Bernard Lasseigne was vice-president of EBAE, an association that Sacha had become attached to. Bernard Lasseigne recounts in the "EBAE info" the story of a missed opportunity. Such is life...

The article which appeared in ’EBAE INFO’ in 2004

The Epidermolysis bullosa simplex is a very serious genetic skin disease which is often fatal. It has a self-help Association (Debra France), an officially recognised non-profit-making organisation, founded in 1985 to fight against this so called "orphan" illness. Around 10 000 children are affected in France.

Geoffrey, Mélodie, Sacha & Adrian at a party in 2003

Debra France official website :
Debra France on Facebook : []

You can contact the full time secretary for any information:
Mireille Nistasos
La Mutuelle du Midi / AG2R
16, La Canebière
Tél. : 33 (0)4 91 00 76 44
e-mail :