Content for Families, Carers and Professionals

Centres of Excellence

7

We 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 children's hospitals in the UK and hope to be launching a centre of excellence very soon in the Midlands.

As you will see from the animation, our vision is to have a CDKL5 Nurse Specialist, we believe this will bring added value to the clinic, but also to the families once they leave the clinic as the support will be taken into the community.  We appreciate not all families will be able to access a centre of excellence for a variety of reasons and therefore it is essential for families in the UK and Europe if needed, to have a single point of contact should they need advice, support or just an reassuring hand to allay their fears.

We do not yet have the funding in place for this post and therefore in the coming months we will be trying to maximise our fundraising efforts within communities but also with trusts and grants.  If you are interested in fundraising for CDKL5 UK then visit www.justgiving.com/cdkl5uk you can plan an event and use justgiving to collect your funds or set up a one-off or monthly donation.

Alternatively if you wish to discuss further then contact our Chairperson, Carol-Anne Partridge by emailing her at carolanne@cdkl5uk.org.

We hope you can see the value of this vision as much as we do.

 

 

  CDKL5 disorder, centres of excellence