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CDKL5 UK are delighted to have received a grant of £9,000 from Immedica Pharma UK Ltd to fund a one-year subscription to the vCreate video monitoring platform, supporting clinical care at Bristol Royal Hospital. This grant was provided as part of Immedica’s support for patient care initiatives. Immedica has had no involvement in the selection of patients, clinical decision-making,…
On Rare Disease Day 2026, we sat down together to watch the ELJ-101 webinar with Russ Addis, PhD, Chief of Pipeline Strategy and Head of Genetic Medicine of the LouLou Foundation – and yes, we all had the same moment of thinking, “Right… do we need a degree for this bit?” Luckily, Russ explained a…
💚 World Mental Health Day: Caring for the Carers 💚 Today, on World Mental Health Day, we want to pause and acknowledge the emotional realities faced by families living with CDKL5 Deficiency Disorder (CDD). Through our partnership with Rareminds, we launched a dedicated counselling pilot in October 2024 to better understand and respond to the…
Ultragenyx 29th September 2025 Dear Community Members: We want to take a moment to update you on UX055 the gene therapy program for CDKL5 Deficiency Disorder (CDD) currently being developed by Ultragenyx. Some of you may know the company has several late-stage programs, some of which have experienced delays. These delays have impacts on programs…
June has once again concluded, marking another powerful CDKL5 Awareness Month, a crucial period where our united community shines an even brighter light on CDKL5 Deficiency Disorder (CDD). This past month served as a profound reminder of the resilience, dedication, and unwavering hope that defines us, families living with CDD, as we collectively drive forward…
Science: Breakthroughs in Small Molecule Drugs Significant progress was shared on new treatments for CDD, particularly in anti-seizure medications: Ganaxolone’s Journey: From a small trial with four patients in 2017 to becoming the first approved drug for CDD in the US and Europe, ganaxolone’s journey is a powerful testament to rapid progress when looking back.…
