CMV Action is the only charity in the UK providing support and information to families affected by congenital cytomegalovirus (CMV). Congenital CMV is the most common viral infection that can affect babies before birth, with potential long-term health impacts such as hearing loss, developmental delays and vision loss. It can also cause miscarriage and stillbirth. As many as 1 in 200 newborn babies are born with congenital CMV. The majority of these will not have any symptoms. However, around 1 in 1,000 born in the UK every year will have permanent disabilities as a result of congenital CMV – around 900 children every year. As congenital CMV is a relatively unknown condition, it is a common misconception that it is rare. It is in fact more common than Down’s syndrome, Toxoplasmosis, Spina Bifida or Cystic Fibrosis. Despite the prevalence and potential severity of congenital CMV, awareness and knowledge are alarmingly low among healthcare professionals, parents and the general public. One of our key roles, therefore, is to develop and deliver resources and training for healthcare professionals, run public awareness campaigns, and collaborate with researchers and policy makers to improve outcomes for those affected by congenital CMV.
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