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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 Investment-France 2030 through aRead More → ...

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Symposium virtuel ELA International 2022 – To review the symposium

ELA International organized a virtual symposium on Saturday September 24, 2022   Therapeutic innovation: what ethical rules and what access? This event is a continuation of a first important event organized in last November on Clinical trials and Ethics. It brought together medical experts, industrialists, health agencies and families to exploreRead More → ...

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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 → ...

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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 → ...

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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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