The purpose of this network is to provide information and resources to individuals who are deafblind from congenital rubella syndrome, their families and the professionals who serve them.

Although rubella is being eliminated in many parts of the world, it remains a health issue in countries without effective immunization policies. As a result, children continue to be born deaf, blind and with additional disabilities due to congenital rubella syndrome (CRS). In addition to these children, adults with CRS continue to live with health issues related to the ongoing effects of this virus. The number of professionals, worldwide, with experience in working with this population is quite small, yet the needs of individuals with CRS are quite complex and diverse.

Recognizing the need to provide a forum to connect these professionals, the Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC) hosted an International Symposium on Rubella at its headquarters in New York in March, 2005. Representatives from twelve countries participated in two days of presentations and discussions regarding the history of rubella, worldwide immunization efforts, issues in education, late onset medical manifestations, areas of current research and the need for collaboration and further research. At the end of the symposium, the group developed an action plan which included applying to DBI to create a Rubella Network. This network was approved in July 2006 and had its first meeting at the Deafblind International Conference in Perth, Australia, September 2007.

Goals of the Network

1. to raise awareness of the importance of rubella immunization leading to the elimination of congenital rubella syndrome.
2. to encourage research on the long term effects of the rubella virus on the health of individuals with CRS and their families.
3. to share information and international resources on CRS
4. to educate individuals with CRS, their families and the professionals working with them as to the early and late onset manifestations of this syndrome.
5. to create a database of professionals with experience with CRS who would be willing to be resources to other professionals. Health care providers are especially encouraged to add their names to this database.
6. to publish information about CRS in journals.
7. to use the DBI website to disseminate information about CRS in many languages.
8. to hold rubella network meetings whenever possible at DBI conferences.