CDKL5 Doesn't define me - by CDKL5 UK

CDKL5 UK

CDKL5 UK is a charity run by parents caring for a child with CDKL5 deficiency disorder. We fully understand the daily challenges faced living with this condition and recognise that it can feel isolating looking after a child with a disability, but you are not alone.

Our aim is to create a community across the UK and beyond to offer support and advice.

Together we are stronger

CDKL5 CAST

Please check out our CDKL5 Cast – here you will find the latest news, media, and events.

If your are hosting any event and would like it advertised on our website then please get in touch by emailing admin@curecdkl5.org.
Remember we are here to help

Together we are stronger

CDKL5 BLOGS

We know as much as anyone how isolating it can be when you have a loved one diagnosed with CDKL5 deficiency, but we also recognise children with CDKL5 deficiency have also bought much joy into their families lives. 

Check out our blogs many written for parents by parents.

Together we are stronger

CDKL5 UK

CDKL5 UK is a charity run by parents caring for a child with CDKL5 deficiency disorder. We fully understand the daily challenges faced living with this condition and recognise that it can feel isolating looking after a child with a disability, but you are not alone.

Our aim is to create a community across the UK and beyond to offer support and advice.

Together we are stronger

CDKL5 CAST

Please check out our CDKL5 Cast – here you will find the latest news, media, and events.

If your are hosting any event and would like it advertised on our website then please get in touch by emailing admin@curecdkl5.org.
Remember we are here to help

Together we are stronger

CDKL5 BLOGS

We know as much as anyone how isolating it can be when you have a loved one diagnosed with CDKL5 deficiency, but we also recognise children with CDKL5 deficiency have also bought much joy into their families lives. 

Check out our blogs many written for parents by parents.

Together we are stronger

What is CDKL5?

CDKL5 deficiency disorder (CDD) is a rare X-linked genetic disorder that results in early onset, difficult to control, seizures, and severe neuro-developmental impairment. CDD is classed as a rare disease with a prevalence of 1:42,000. There are many children and adults living with CDD worldwide.

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What is CDKL5?

CDKL5 deficiency disorder (CDD) is a rare X-linked genetic disorder that results in early onset, difficult to control, seizures, and severe neuro-developmental impairment. CDD is classed as a rare disease with a prevalence of 1:42,000. There are many children and adults living with CDD worldwide.

CDKL5 Centre of Excellence, UK

A new Centre of Excellence, as recognised by NHS England, is being set up at Bristol Royal Hospital for Children, specifically for children and adults with CDKL5 CDD in the UK, led by Paediatric Neurologist Dr Sam Amin. The initiative hopes to help support the holistic care of your child, in partnership with your local medical team, by providing specialist clinical input as well as focused pastoral care and support.

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CDKL5 Centre of Excellence, UK

A new Centre of Excellence, as recognised by NHS England, is being set up at Bristol Royal Hospital for Children, specifically for children and adults with CDKL5 CDD in the UK, led by Paediatric Neurologist Dr Sam Amin. The initiative hopes to help support the holistic care of your child, in partnership with your local medical team, by providing specialist clinical input as well as focused pastoral care and support.

Find the latest news and events about CDKL5 UK

How can you help

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Events

We rely on our supporters’ generosity to create awareness about CDKL5 and support those who need us!

Fundraise

Do a Bake Sale, take on a sporty challenge or do something else brilliantly barmy to raise money.

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Events

We rely on our supporters’ generosity to create awareness about CDKL5 and support those who need us!

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Fundraise

Do a Bake Sale, take on a sporty challenge or do something else brilliantly barmy to raise money.

Our Story

CDKL5 UK is one of around 9 separate organisations that are raising awareness, supporting families, and raising funds for research around the world.  All these organisations have been set up by families of affected children and work in isolation of each other.

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Our Story

CDKL5 UK is one of around 9 separate organisations that are raising awareness, supporting families, and raising funds for research around the world.  All these organisations have been set up by families of affected children and work in isolation of each other.

Part of the CDKL5 Alliance

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