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