Rett Disorder UK Working Group

First Meeting of the Rett Disorders UK Working Group! On Thursday 10th March 2016, the Rett Disorders Alliance brought together the first meeting of a UK Working Group for Rett Disorders. This group comprised of UK clinicians and therapists from across the UK who have special interest and/or expertise in Rett Syndrome and related disorders.…

CDKL5 Collaboration

CDKL5 UK Chairperson, Carol-Anne Partridge and trustees, Sarah Skillicorn and Shelley Ashton met with Paula Connolly, trustee of CDKL5 Ireland this weekend.  The aim of the visit was to meet with another Organisation that is working in the field of supporting families living with another rare disease, Niemann Pick, in order to share experiences of…

My CDKL5 Journey

In 2014 CDKL5 UK were awarded a National Lottery grant from the “Awards for All” programme.  The project title was “CDKL5 Education” the grant was to cover the re-design of our website, but also for a series of educational resources.  One such resource was the “My CDKL5 Journey” folders.  The folders resemble a health and social care passport.  It…

Rett Disorders Alliance

Some good news to share which we will hope will change the face of Rett and Rett-like disorders within the health and social care sectors in the UK. A collective voice creates stronger communities ‪#‎togetherwearestronger ‬‪#‎curecdkl5‬ Therefore we are delighted to announce the formation of the Rett Disorders Alliance of the UK. The Rett Disorders Alliance…