Friday, February 22, 2008

Worldwide CMV Links for parents

Carmen Burton, Founder of the Congenital CMV Association (UK), compiled this valuable list of worldwide CMV links for parents:

Congenital CMV Association (UK)
Established over 20 years ago and run on a voluntary basis by the parents of CMV children. We can put parents in touch with others. We distribute a regular newsletter and send out any other useful or interesting information. We spread Awareness and help professionals with research etc. Website: Email: or

European Congenital Cytomegalovirus Initiative:
The European Congenital CMV Initiative (E.C.C.I.) 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. Information on latest research, info etc.

National Congenital CMV Disease Registry – Baylor (USA but includes parents from all over the world):
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 this 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. Parents from all over the world including UK.

Congenital Cytomegalovirus Foundation (USA):
Preventing congenital CMV through Awareness, an American website hosted by professionals and parents together. A wealth of information, features, advice, links etc

Stop CMV (USA--but includes parents from all over the world):
Set up by the mum of CMV twins, this website offers a wealth of information and support materials. Get info and links, buy stop CMV t-shirts, download posters, web banners etc. Become a stop CMV rep – they would love to spread out to the rest of world. A very active Awareness Group and website. Website:

CMV Kids:
A new site coming soon, so watch this space:

CMV Listserv – members from all over the world!
“Our mailing list is for parents and caregivers of children with congenital CMV, therapists, doctors and nurses who work with our children, those with CMV, and those researching ways to conquer cCMV. Our email list provides a forum to learn from each other, share our frustrations and rejoice in our know there is someone out there who "really knows" what we are going through. Parent to parent contact – lots of answers to all those stupid questions from parents who have been there, done that! Sign up, or search the archives at

CMV Blog (USA):
Hosted by a mum whose CMV daughter died when she was 16, you can share your story, participate in parental discussion groups and find additional resources on CMV prevention. Website:

Anything But A Dog:
A book written by Lisa Saunders (see blog above) about her CMV daughter and their dog, a sad, but funny, heart moving true story of Elizabeth and her dog. A great way to spread CMV Awareness. (A donation from every sale will be made to the UK CMV Association)Website: to

Photo caption: Elizabeth (age 15) and big sister Jackie (18) on the boardwalk at night--our last family vacation before Elizabeth died during a seizures in 2006.

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