A great few days catching up with people. Will see them again soon in Rome at the European Epilepsy Congress where I will be presenting on the patient perspective of the patient journey for rare and complex epilepsies #cdkl5champion

It was great to meet Ceri at the #ILAE #Europeanepilepsycongress24 #eec24 #epilepsy presenting her work on CDKL5 Astrocytes, I couldn’t claim to understand it, but we are grateful for her adding to the CDKL5 pool of research - good luck in your final PhD year Ceri,

Today we started the #EEC2024 International League Against Epilepsy Epilepsy Congress with a session on #CDKL5 deficiency disorder. It was a great example of collaboration between expert clinicians and parent advocates like Carol-Anne Mum to Amber from Cure CDKL5 💚 it made it worth it to be there at 8am!

.Roland Thijs : We need to talk about sudden unexpected death in epilepsy #SUDEP and act more actively especially in case of #tonicclonicseizures and particularly if #nocturnalseizures #EEC2024 Rome @ilae

My daughter did not win the British Hedgehog Preservation Society competition. I am biased - not least because, as you can see, I appear in the design - but I think this is too too good not to share! 🍁🍂🤎❤️🦔🧡💛🍂🍁 #BonfireNight2024 #NoBonfiresPlease #RememberHedgehogs

Amazing news. We were delighted to be involved in shaping the future for this training #Collaboration #patientadvocacy #patientvoice #togetherstronger Carol-Anne Mum to Amber

Proud to speaking at this event about the impact of lack of QoL data in rare and complex epilepsies. Lovely being in Rome again just before Christmas #epicareepag #raredisease #patientadvocate #cdkl5

CDKL5 UK is pleased to announce the appointment of our new Development and Engagement Champion, Bethan Vaughan. This exciting step forward has been made possible by a generous and private donation. Beth comes to CDKL5 UK with a wealth of experience, having worked within the

. Rare Disease Day Cure CDKL5 💚💜💚

It's been a jam-packed #RareDiseaseDay2025 💜🦓 This morning, Beth and Carol-Anne attended a meeting with a research group in Bristol, to learn more about their exciting new research into the CDKL5 gene and it's expression in cells in the brain 🧠🧬🔬 Then this afternoon,

Flowers are blooming and tree buds are budding, which can only mean one thing - today is the first day of Spring 🌿🌻🌷 Night and day are equal in length, 12 hours each, a balance of light and dark ☀️🌕 Spring-time symbolises renewal and growth, and is often associated with new

Today is #PurpleDay2025 an international day to increase awareness of epilepsy and it's effects. Did you know? 💜 65% Million people have epilepsy worldwide 💜 1 in 100 people are estimated to have epilepsy 💜 In 50% of cases, the cause of epilepsy is unknown Epilepsy is a

💐🌹🌻 Happy Mother's Day 🌻🌷💐 Today, we celebrate the strength, resilience, and boundless love of mums, step-mums, foster-mums, carer-mums and grandmothers everywhere, but especially those whose children are living with CDKL5 Deficiency Disorder (CDD). Your journey is one

Take a moment to listen to Carol-Anne, our co-founder and chair, as she shares her journey with her daughter Amber—diagnosed with CDKL5 at age 4. Over the past 20 years, Carol-Anne has learned how to connect with Amber, who is non-verbal, through non-verbal cues and intensive

✨We're very excited to kick off the 1st European Meeting of all associations dedicated to Rare and Complex Epilepsies in Barcelona! It has been coordinated by the ePAG (European Patient Advocacy Group) representatives within EpiCARE, and more than 250 associations have been

We had a brilliant 24 hours in Barcelona for the launch of a new Complex and Rare Epilepsies Alliance in Europe of which CDKL5 UK is a founding member under the direction of Carol-Anne our chair. Carol-Anne and Matt Bolz-Johnson delivered a mental health workshop which was

NEW PUBLICATION ALER We are excited to share the publication we’ve been eagerly waiting for, a fantastic example of patients as partners in action! This collaborative project, funded by Orion Pharma, brought together patient advocacy groups, medical and research professionals,

World CDKL5 Awareness Day Today, on June 17th, we honour you, the incredible individuals, families, and caregivers who walk the CDKL5 journey with unwavering courage, love, and resilience. Whether you're navigating the heartbreak of early seizures, advocating for your child’s

Beautiful as always 💚💚

💜 Huge thanks to everyone who joined us in St Stephen’s Green for #5KforCDKL5! And to Jonna Malone, CDKL5 Ireland member, for sharing what life is like with CDKL5 and why research matters. Still time to support 👉 gofundme.com/f/5forCDKL5