ELA Families/Researchers meeting 2022 : VIDEOS AVAILABLE
ELA international repeats the ELA Families/Researchers meeting virtually, an event open to the international community of patients affected by leukodystrophy. A simultaneous translation in 5 languages (German, English, Spanish, French, Italian) allowed everyone to follow the presentations live. The videos of the meeting are available. You can review it now:Read More →...
ALD connect meeting on Friday, July 22
ALD connect will be holding an Externally-Led Patient-Focused Drug Development meeting on Friday, July 22 to inform the Food and Drug Administration, about what it is like to live with ALD. The event will be open to the public online and free of charge. For more information:Read More →...
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 →...
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 →...
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 →...
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 →...
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 →...
