Advancing research into the understanding and development of therapeutics for CDKL5 deficiency disorder

About the Loulou Foundation

Loulou Foundation is a private non-profit UK foundation dedicated to advancing research into the understanding and development of therapeutics for CDKL5 deficiency disorder. The Foundation has already funded important research projects at leading universities in the US and Europe, with a total of 31 separate projects in 41 labs at 30 different institutions so far, enabling the focused research of over 120 scientists. In October 2015 and again in October 2016 the foundation also held an international symposium at The Wellcome Trust in London, the CDKL5 Forum, attended by more than 100 leading researchers from around the world. And in November 2017 the CDKL5 Forum was held for the first time in the United States in the City of Boston, with almost 200 attendees including senior representatives from 35 leading companies. It has also launched the online portal to enable enhanced collaboration by researchers: www.cdkl5forum.org.

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Main lessons from the 2018 CDKL5 Forum

25 October 2018

For the past four years the Loulou Foundation hosts an annual “by invitation only” meeting where scientists and drug developers working on CDKL5 deficiency, together with representatives from patient organizations, meet to discuss the latest advances. This was the second Forum I attended, and my first since joining the Loulou Foundation. There were major news announced during the meeting, like a new Phase 2 clinical trial in CDKL5 deficiency disorder with fenfluramine, a drug ...

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