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 Investment-France 2030 through aRead More →
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 Leuconnect created by ELA International, inRead More →
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 research was extended internationally by the Bluebird Bio laboratory which conductedRead More →
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 child’s illness, but also the difficult conditions ofRead More →
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 Brain and Spinal Cord Institute at the Pitié Salpêtrière.Read More →
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. • Nicolas Mathieu: I am an author andI haven’t done a dictationRead More →
ELA is launching, with the support of the Roche Foundation, tutorial videos to help you register and use the platform. Four videos are already available. The first video will help you register for Leuconnect, the second one will guide you to use the messaging system, the third one is dedicatedRead More →
The third ELA/MLD Research Group consortium was held in Paris on Friday 21 June 2019. The ELA/MLD Research Group consortium was born at the end of the symposium organised by ELA International in Luxembourg in December 2017. At the initiative of Dr. Caroline Sevin, paediatrician at the reference centre forRead More →
ELA Ambassador Award 2019 : All ambassadors, all leucofighters! The 14th edition of the Ambassador Award took place at the Cité des Sciences et de l’Industrie on June 5th. Like every year, this ceremony was an opportunity to thank and reward the students representing their peers during the Put OnRead More →
On 22 May, Maison Baccarat hosted a prestigious dinner for friends, sponsors, partners and Crystalfoot members. Crystalfoot is a collection of crystal feet made from the footprints of great football players. The first of this collection, made free of charge by Baccarat, is that of Zinedine Zidane, ELA’s iconic sponsor.Read More →
