About CDKL5 UK - Our Mission and Vision
The Voice for the CDKL5 Community in the UK
We do this by:
- sharing relevant and up to date information about the condition
- organising face-to-face family days, and online events
- delivering training for health and social care professionals
- supporting patient participation in the latest clinical trials
- providing a platform to empower individuals and families to be involved in
the design and implementation of research projects, using their lived
experience to help others on a similar journey
Our Mission is to provide help and support to individuals and families affected by CDD.
Our Vision is a world in which CDD and its effects are overcome by way of
effective treatments and ultimately, a cure.
CDKL5 UK is a charity run by parents who are caring for a child with CDKL5 Deficiency Disorder (CDD). As parents and carers, we fully understand the challenges faced by families, and recognise that it can feel isolating looking after a child with a disability, but you are not alone.
At CDKL5 UK our aim is to provide support for families and carers, whether that’s through sharing information about the condition, organising family days to supporting participation in the latest clinical trials.
We share the same goal, to help our children live life to the full.
CDKL5 Deficiency Disorder (CDD) is a rare X-linked genetic condition which results in early onset, sometimes difficult to control seizures, neuro-developmental impairment and other symptoms of varying severity. CDD is a spectrum disorder, meaning everyone with the condition is affected differently. Some people are severely affected with many symptoms, others are more mildly affected, with less symptoms. Some people do not experience certain symptoms at all.
Due to the location on the X chromosome, CDD affects more girls than boys, and research is ongoing in this area, especially into the varying severity of the condition between individuals.
This rare condition was first identified in 2004 and there are now over 13,000 family affected in the UK. As awareness of the condition grows this number is increasing every day, and currently there are 750 new cases registered every year.
Here at CDKL5 UK, we want to help you and your family, no matter how severely or mildly you are affected. We are here for you.
There have been many breakthroughs in our understanding of this complex condition, but there is still much more we need to know. One of our aims is to raise money to support the global research effort, and to raise awareness of CDKL5 within the medical and research communities.
We also want to educate the public about CDD and be a strong voice for our children. We want to challenge the assumptions about people with disabilities, and help our children and young adults fulfil their potential.