ID #1005

What is the role of support groups to help Costello syndrome families.

Starting with the Costello Syndrome website andthe International Costello Syndrome Support Group (ICSSG) in the mid- 1990s, a networkof families and professionals has developed into a dynamic partnership.

This has facilitated education and promoted awareness of medical, social and researchissues. Biannual conferences have been held in North America since 1999 forfamilies and professionals. This parent/professional relationship has beenvital in increasing knowledge about CS.

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