How we can help


At CMV Action we understand just how difficult a diagnosis of CMV can be for your family. The early days following diagnosis can be bewildering and upsetting. As your child gets older they may face new challenges as a result of the virus.

 This is why we provide our members with a very personal support service:

  • A named individual at the end of the phone, email or private message on social media
  • If you join us you can be put you in touch with other families in similar circumstances or in your area
  • Our team of volunteer support advisers all have experience of congenital CMV. They are here to talk to you about your experiences, point you in the direction of further information and advise wherever possible

Please contact us by phone if your support query is urgent.

The answerphone is monitored daily so please leave a message with your telephone number. We will get back to you within 24 hours

Contact a support advisor by:

T: 0808 802 0030


Become a member

Your support team

When you contact CMV Action we will pass your details to a volunteer who has the appropriate experience and knowledge to support you. If you then decide to become a member you can be put in touch with families living near you or/and families with similar experiences, if you wish to. We can also contact medical advisors if your query relates to a medical issue.

Some children born with CMV will not have any health problems, others will have more serious problems.  Our team of volunteers has been chosen to cover a range of different issues that families may face.


Key experiences: hearing loss, cochlear implants, ADHD

Liz has 4 boys, the youngest two are twins. They are aged 16 and one of them is affected by CMV and has cochlear implants.


Key experiences: Hearing loss, cochlear implant, language disorder

Sarah's son was born with some symptoms of CMV but was not diagnosed until he was nearly 3 years old. He is now aged 18, profoundly deaf with a cochlear implant. After much determination he has overcome most of his earlier motor and balance issues.  He is very happy and outgoing and has a great sense of humour.


Key experiences: Teacher of the Deaf. Severe cerebral palsy, blind, epilepsy

Jan's granddaughter was born with CMV and is severely affected. As a Teacher of the Deaf, Jan was barely aware of CMV, let alone the possible consequences. 


Key expereince: Midwife

Kate is a midwife with a special interest in CMV.


Sensory and feeding issues.

Rebecca's son is now 7 and although CMV has affected his development, he has overcome many issues and is the happiest little boy. 



Response time

Please be aware that this service is provided by volunteers.  Although we will try and respond to your enquiry as soon as possible, we may not always be able to do so straight away. 

We will aim to get back to you within three days. If it is urgent please phone 0808 802 0030. The answerphone is monitored daily so please leave a message with your telephone number. We will get back to you within 24 hours. Our volunteers are not health professionals but we do have medical professionals that we can refer to if necessary. However, they will happily support you through decisions you need to make and talk about your experiences and concerns as well as their own experiences.


Our Stories

My daughter was born with congenital CMV. I live in the U.S. and I had never heard of CMV before my pregnancy, nor had any of my friends or family who had normal pregnancies. Throughout... Read more
December 2013 This is our Evalyn Rose, she was a long awaited baby.  My husband and I were told we could not have any more children due to fertility issues, we tried a round of... Read more

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