Information and Support on Congenital CMV

What is CMV?

CMV, or Cytomegalovirus, is a common virus that can infect people of all ages.  Most healthy adults and children will have no signs or symptoms and no long-term effects.  However, it can be very dangerous to unborn babies.  In fact, congenital CMV is one of the most common causes of birth defects in the UK.   Around 1 in 1000 children will be born with permanent disabilities as a result of CMV.  Despite this, there is very little awareness about this virus.  This can make it stressful and confusing for families coming to terms with a diagnosis and planning how best to support their children.

At CMV Action, we understand - we’ve all been there before.  This is a more common condition than many people realise and help is at hand from families who have been in the same situation.

How we can help?

CMV Action is a UK organisation of parents and volunteers who have come together to support families and raise public awareness.

We offer advice, support and friendship to anyone affected by congenital CMV

  • We can provide written information checked by experts so you know you can trust it.  We have worked with medical experts to provide you with helpful & accurate information about
  • Download all the latest publications on our including our Pregnancy leaflet and CMV: Your Questions Answered.
  • We have a team of available on phone or email to talk through your experiences, whatever the age of your child
  • We are able to put families in touch with each other, who may be facing similar issues, as well as those who live near to each other
  • Our website is packed with information and stories
  • You can sign up for our quarterly newsletter to stay up to date with all the latest CMV news, including the latest research

Contact us on 0808 802 0030 or


"Thank you so much for your advice, our GP has agreed to write a letter to try and get the Guthrie test retested so fingers crossed we will finally get an answer"

"Thank you very much for your email. It is nice to hear that there is a group out there that may be able to put me in touch with other families as I haven't met anyone that has experience of CMV. I must admit, until now, I have found it difficult to think about speaking to anyone else about it but I think now it could be useful"



All the information a family needs about CMV

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Our Stories

Everything had been going fine with my pregnancy until the 18-week scan. Then I was told I had my dates wrong and they put me back by 5 weeks, originally it was August 15th, now it was... Read more
Lewis was born 3 weeks early on 23rd December 1997 following a normal healthy pregnancy. The labour was not easy, but relatively quick being 4 hours in total but he was in distress and... Read more

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