Comment: | Unique- The Rare Chromosome Disorder Support Group is a self help group that is also a registered charity, which provides support to individuals or to families with children with a rare chromosome disorder. It puts families and individuals in touch with each other, thus enabling them to share similar experiences and offer mutual support. Information is available and a newsletter is published three times a year. There are over one hundred local contacts. The group holds a comprehensive computer database on rare chromosome disorders amongst its membership and can link families to appropriate research groups. The group has a world wide mailing list, with over five thousand families. A conference is held regularly where families and involved professionals can meet. |
