A small group covering a variety of related, but rare, conditions. The group aims to provide support to parents who have children with one of the disorders in this group by linking parents with others and by the publication of a regular newsletter and occasional pamphlets of topical interest. Pompe's Disease Page Website of the Pompe's Group of the Association for Glycogen Storage Disease. Protein S Deficiency and Thrombophilia Protein S Deficiency is a rare blood condition that can cause thrombophilia. Hereditary PSD is caused by a gene defect but Protein S Deficiency can also be acquired during pregnancy and with liver disease.
Web site provides lifestyle and research information and an online forum.
Not strictly a self-help resource but more a source of comprehensive scientific information on genetics. The diseases information database may be of particular interest. To help families and others who suffer from any of the twenty-three hereditary purine or pyrimidine disorders. Children's Support Group Reflex Sympathetic Dystrophy Syndrome is an extremely painful condition which may develop as a consequence of a minor injury. A site to help facilitate and co-ordinate information exchange between support groups, clinical professionals and families affected by Shwachman syndrome.