June 6, 2012, ELA families, sponsors and ambassadors gathered in Paris Disneyland. Back in pictures …

Written on Friday 17 August 2012

June 6, ELA, with support from its sponsor iconic Zinedine Zidane, 650 people gathered at Disneyland Paris. Around the faithful sponsors, Ambassadors “Put on your sneakers and fight the disease” could meet the families of ELA and take the full measure of their engagement throughout this school year. An eventful day in the magic of […]

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Report on the 23rd General Assembly and Families/Researchers Conference – VIDEO ON LINE!

Written on Friday 4 July 2014

On the 5th and 6th of April, 360 people took part in the ELA General Assembly and Families/Researchers Conference at the Novotel Vaugirard hotel in Paris. Guy Alba, ELA President and founder, Christine Doublé, General Secretary and Pascal Prin, Treasurer, presented the association’s annual report, activity report and financial report before speeches from Gunther Forstner, […]


ELA families were invited to the Elysée Palace

Written on Monday 12 May 2014

Did you know that the traditional Elysée Christmas tree dates from 1889 when Sadi Carnot was President? Since then, no President has departed from the rule. Thus, on Wednesday 18th December, François Hollande, the President of the French Republic, and his partner Valérie Trierweiler, had as guests 600 children in the splendid setting of the […]


The Orphanet encyclopaedia is enriched by information about the adult Refsum disease

Written on Monday 12 May 2014

The Orphanet encyclopaedia has just released two notes concerning the adult Refsum disease: An Orphanet General Public note destined to inform you about the adult Refsum disease, to which the ELA association has contributed. This information does not replace a medical consultation and its aim is to promote communication with doctors. The Orphanet Handicap note, which […]


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