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 and development of therapeutics for CDKL5 Deficiency Disorder (CDD), a rare neurodevelopmental condition that affects tens of thousands of families worldwide. Since its establishment in 2015, the Foundation has funded important research projects at world-leading universities and research organizations, with a total of over 100 separate projects in more than 60 labs on four continents, enabling the focused research of greater than 200 scientists. Every year since 2015, the Foundation has hosted the CDKL5 Forum, an annual international symposium dedicated to CDKL5 and CDD. The CDKL5 Forum has become the preeminent scientific meeting dedicated to CDKL5, with nearly 200 scientists, clinicians, pharma industry representatives, and regulatory experts attending the most recent CDKL5 Forum. On October 27-28, 2025, the CDKL5 Forum will be held in Boston, USA, for two days of meetings covering basic science, translational and clinical development, and therapeutics updates on CDD. The Foundation has also launched an online portal to enable enhanced communication and collaboration by CDKL5 researchers: www.cdkl5forum.org.

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Loulou Foundation

"If it takes a village to raise a child, it takes the whole world to cure one with a rare disease." Majid Jafar

4 May 2026

Majid Jafar, Co-Founder of the Loulou Foundation, discusses the strategic evolution of the patient research organisation that he co-founded with his wife following their daughter Alia’s diagnosis with CDKL5 Deficiency Disorder (CDD). By moving beyond traditional advocacy into "philanthropharma", Jafar has spearheaded the development of a global translational toolkit, contributing to the first FDA-approved treatment for the condition and gene therapies in the pipeline. He shares insights on the power of industry partnerships, the "people of determination" ecosystem in the UAE, and the impending shift from symptomatic treatment to genetic cures.

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