Looking back, and so that our experience can be helpful to others, the observations I can make through my 20 years of living with Elias's severe epilepsy are as follows:…
Thea’s story
Andrew Evans ran the London Marathon in 2026 to raise awareness of CHD2, with Mencap benefiting from the donations he raised (CHD2 UK is not yet a registered charity). Below…
CHD2 Prognosis in the UK – do we have the whole picture?
As a co-founder of the CHD2 UK support group, I was becoming increasingly aware that many of our new families with recently diagnosed CHD2 children were having difficulty coming to…
So you have been diagnosed with a rare genetic condition – what next?
It has taken 13 years for my son’s ultra rare genetic medical condition to be diagnosed. Unfortunately for many parents and carers, they’ll never receive a diagnosis and that must…