Who are CHD2 UK?
We are an organisation created by the families and carers of children and adults affected by CHD2-related genetic disorders in the UK. CHD2 is an ultra-rare genetic condition characterised by severe epilepsy, learning disability, autistic traits and challenging behaviours.
We recognised that it was only through the sharing of mutual information and lived experience that we could support each other, gain knowledge and aim to secure the best possible outcomes for our loved ones with CHD2.
Our mission
CHD2 is a serious disorder that is extremely challenging not only for those with the condition but also for those who are caring for them. As an organisation, we hope to provide support, advice and signposting for those families raising a child with CHD2, whilst also easing and assisting their transition into adulthood and beyond.
Furthermore, by raising awareness of this genetic disorder within the Educational, Social and Health Care Communities in the UK we hope to create a better understanding of the challenges faced by those living with the condition, its prognosis and management, and the stressful and isolating effect CHD2 can have on families.
We also aim to provide a collective voice for CHD2 in the UK in order to increase knowledge and understanding of the condition, so that we can further engage with the medical and scientific research communities. In this way we hope to contribute towards improved and effective treatments.
Parents and carers of individuals with CHD2 have been coping alone with this severe genetic neurodevelopmental disorder since it was diagnosed 12 years ago – now it is time to take control and find our voice.