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I recently had the pleasure in presenting this to families, clinicians and pharmaceutical companies at the 4th International CDKL5 Family Conference in...
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I am a sibling of a child with cdkl5. I have been since I was 5 years old, almost 10 years now. Due to this, over the course of my life I have had many lows but ultimately highs as I have gotten...
10th January 2018
cdkl5, sibling, carers, seizures
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I have a new paper out, published in Neurology Genetics, called “CDKL5 variants: Improving our understanding of a rare neurological condition.” This is a study of all the genetic variants we...
3rd January 2018
CDKL5 Deficiency Disorder, CDKL5 Research, Cure CDKL5, CDKL5 Mutations
25th June 2016The 3rd European CDKL5 Research Conference was held at The St Johns Hotel in Solihull, Birmingham on the 2nd and 3rd of June 2016. The conference consisted of 6...
8th June 2016We are delighted to launch our animation which shows our vision of how we want our centres of excellence's to work. We are fortunate to already be in talks with two...
14th May 2016We are delighted to present our final programme for the upcoming 3rd European CDKL5 Research Conference which is being held on the 2-3 June 2016 at the St Johns Hotel, Solihull. There is still time...
I recently had the pleasure in presenting this to families, clinicians and pharmaceutical companies at the 4th International CDKL5 Family Conference in...
I am a sibling of a child with cdkl5. I have been since I was 5 years old, almost 10 years now. Due to this, over the course of my life I have had many lows but ultimately highs as I have gotten...
I have a new paper out, published in Neurology Genetics, called “CDKL5 variants: Improving our understanding of a rare neurological condition.” This is a study of all the genetic variants we...