Secretary CDKL5 Alliance and Chair of CDKL5 UK
Carol-Anne Partridge, is Mother to Amber who is living with CDKL5 deficiency and is our current Secretary of the CDKL5 Alliance. Carol-Anne is also co-founder of CDKL5 UK and former director of the International Foundation for CDKL5 Research. Aside from CDKL5 UK she represents the CDKL5 Associations in Europe by being the Epilepsy Patient Advocacy group (EPAG) representative for a European Reference Network called EpiCare – an initiative which is working to bring awareness and standardised care amongst other things for people living with Rare and Complex Epilepsy in Europe.
Carol-Anne is married to Adrian, and they also have two other grown up children, Nathan and Cameron. She is a qualified children’s social worker and works full time in South West England. Carol-Anne is passionate about supporting families, raising awareness and challenging assumptions – because of her passion she has just started a Master degree in Global Health Policy with the University of Edinburgh (distance learning) in a hope this will further enhance the experience of families and patients living with CDKL5 deficiency.