Content for Families, Carers and Professionals

Collaboration

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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 supporting families and creating awareness throughout the medical profession of rare diseases.

Niemann Pick-UK are a long established charity and collaborate with another of other organisations and we, here at CDKL5 UK, can learn a lot from such excellent charity.  CDKL5 UK are currently working with a major UK hospital which has a rare disease centre in order to progress plans for the first CDKL5 Centre of Excellence, a further hospital is also interested in supporting our families and patients with CDKL5 disorder with a clinic. 

CDKL5 Ireland was set up in 2015, they have a yearly event, the CDKL5 Fire and Glass Walk.  CDKL5 UK were delighted to receive a cheque from CDKL5 Ireland in support of research.  For those families living in Ireland you can read about CDKL5 Ireland here.

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