CDKL5 Forum – 10-11 October, 2016

This week myself, Carol-Anne and Adrian attended the CDKL5 Forum in London, organised by the LouLou foundation. The meeting was a bit different in format to the European CDKL5 meeting. A number of biotech companies and advisors from regulatory bodies attended, so there was more focus on long-term goals and what would happen should biotech…

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…