International Groups and Organisations


CMV Action is a UK based charity and primarily support families living in the UK. We sometimes receive enquiries from families living abroad and we will always try to give them as much help and support as possible. If you are contacting us from outside the UK we may ask you for more information such as what medical and family support is available where you live and also tell you which other charities you could contact. 


Czech Republic

France     Chanter Marcher Vivre


Italy   AntiCito Onlus


Slovakia (Poland)

Spain      Stop Citomegalovirus

Canada CMV Foundation

USA    The National CMV Foundation has now joined forces with Maddie's Mission, STOP CMV and the Utah CMV Council.

European Congenital Cytomegalovirus Initiative (E.C.C.I.)

The European Congenital CMV Initiative is a network of professionals based throughout Europe with a united interest in congenital cytomegalovirus (CMV) infection. The group is composed of virologists, epidemiologists, immunologists, obstetricians and paediatricians whose aim is to promote awareness of congenital CMV and support and encourage research initiatives into this important infection.                   

National Congenital CMV Disease Registry – Baylor (USA)

The registry is a research program working to learn more about those children born with symptoms of congenital CMV disease. Aside from research, the National Congenital CMV Disease Registry provides an outreach program consisting of the web site, written educational material, and an annual newsletter, CMV Updates for the purpose of educating health care professionals, families, and all others interested in learning more about congenital CMV disease. Additionally, we established and maintain a parent support network as a forum where parents of children congenitally infected with CMV can contact other parents dealing with the challenges of raising a child born with CMV.

Center for Disease Control and Prevention

This is a US agency which focuses on research and support for disease prevention.  They have information on many different aspects of congenital CMV and podcasts about how you can help to avoid infection whilst pregnant.  Do note that much of the information will be specific to the US health system.      


Our Stories

January 2009 My wife’s twelve week scan showed two little people waving at us, practically sat side by side!! I blinked thinking my eyes were blurred... and then told the sonographer... Read more
May 1992 When Ben was born he was surrounded by doctors, so alarm bells immediately started ringing. The doctors didn’t really know what they were dealing with. They didn’t test... Read more

Registered charity no: 1171773