The National Congenital CMV Disease Registry [NCDR] is a passive surveillance research project and an outreach program that has become a clearinghouse of information about congenital CMV infection. They work toward education of parents and service providers. Additionally, they maintain a parent support network, which is a list of parents from around the country who have agreed to share their name, address, and phone number with other families with children who have CMV.
CMV publishes CMV Updates, bi-annually at no charge, and has other brochures available. They will refer patients to specialists in their area.
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