Sign the petition to save children from being denied treatment for commercial reasons

Mathéo could have been cured with a gene therapy invented in France. He was denied treatment for commercial reasons. To prevent this story from happening again, a mother of ELA calls out the French Ministers of Health and Research, as well as the Secretary General for...

Présentation des résultats de l’étude MLD aux Journées Parisiennes de Pédiatrie

Study on the impact of the disease on the quality of life and on the daily lives of families concerned by metachromatic leukodystrophy (MLD): Results presentation at the Parisian Pediatric Days on 10 and 11 December 2021. This study was conducted on the platform...

2021 : A major advancement in the treatment of adrenoleukodystrophy

Thanks to ELA massive investment in research on cerebral adrenoleukodystrophy (CALD), the team of Pr. Patrick Aubourg and Dr. Nathalie Cartier published in 2009 the first results of a gene therapy trial on cerebral adrenoleukodystrophy conducted in France. This...

Leukodystrophies in the time of Covid-19 : a double battle

Solène and Margaux are twin sisters. Margaux has leukodystrophy. She has never been able to speak or walk. In spite of Margaux’s illness, Solène loves spending time with and playing with her sister. Today, Margaux’s parents have to face not only their...

International Day for Rare Diseases

International Day for Rare Diseases, an unprecedented event organised by ELA International at the ICM Paris On the occasion of International Rare Disease Day, on 28 February, ELA organised an original meeting, in partnership with the research laboratory ICM –...

The famous ELA Dictation

Nicolas Mathieu, winner of the Goncourt 2018 prize for his novel ’Their Children After Them’, did us the honour of writing ELA’s 16th dictation.The inspirational and poetic dictation was , magnificently illustrated by Baru, Grand prix d’Angoulême 2010. •...