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Challenge Everything is possible!

The association ELA Switzerland has been selected to receive support from the operation “Everything is possible!” organised by “Radio Télévision Suisse” from December 11th to 17th 2021. The solidarity challenge in favor of ELA Switzerland consisted in the complete renovation of the meeting room of the association in its headquartersRead More → ...

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Study on the quality of life of women with X-ALD: two new sites are open

Two new sites are open for the study on the quality of life of women with X-ALD on Leuconnect The study on the quality of life of women with X-ALD is now open in Spanish and Italian on Leuconnect. This study is an extension of the first study already availableRead More → ...

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Publication of recommendations Guidelines for Clinical Trials in CACH Syndrome (VWM)

9 clinician-scientists, experts in CACH Syndrome, met in a consortium. They represent the countries of the International Council for Harmonization–Good Clinical Practice guidelines. CACH Syndrome is a genetic disease of the hypomyelinizing leukodystrophy family, with a progressive degradation of the white matter of the brain. There is no treatment atRead More → ...

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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 Leuconnect created by ELA International, inRead More → ...

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Virtual SYMPOSIUM ELA International « CLINICAL TRIALS AND ETHICS » Saturday November 27th – 3:00 PM – 6:00 PM (CET)

Virtual SYMPOSIUM ELA International « CLINICAL TRIALS AND ETHICS » Saturday November 27th, 2021 ELA international organized an innovative symposium aiming to reflect how patients and their families can be involved in the various research projects that concern them, and to define the ethical rules that will guide ELA InternationalRead More → ...

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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 research was extended internationally by the Bluebird Bio laboratory which conductedRead More → ...

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1 JUNE 2021: OPENING OF THE 1st CLINICAL TRIAL FOR CACH SYNDROME

The disease CACH (Childhood Ataxia with Central Nervous System Hypomyelination) is a rare genetic disease of the hypomyelinating leukodystrophy family, also known as leukoencephalopathy with vanishing white matter (VWM). It is characterised by a progressive degradation of the white matter in the brain, leading to various cognitive disorders and muscleRead More → ...

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