Annotation: The Vereniging Samenwerkende Ouder en Patientenorganisaties (VSOP), or the Dutch Genetic Alliance, is an umbrella organisation of about sixty national, disease-linked, parent and patient organisations, most of them concerned with genetic and/or congenital disorders. The VSOP's mission is to optimise the implications of research in the field of genetics, medical biotechnology and life sciences for both patients and the public well-being and health. The integrated participation in society of people with a hereditary disorder or a genetic predisposition is central in this mission. In addition to this, the VSOP strives to increase awareness of developments in the area of genetics and the involvement of the public and society at large, and more specifically of those people directly concerned with these disorders. The VSOP aims to arrange that all citizens will be informed about the possibilities and consequences of these developments so that well-informed, well-thought-out dialogue and decision-making can take place. Three fields of interest are central to the VSOP: community genetics, medical biotechnology and rare disorders. Attached to all three fields are ethical implications and societal awareness. VSOP fosters efforts to fulfil vital needs by offering reliable and well-balanced information for patients and public; early and accurate detection and diagnosis of diseases; highly qualified, accessible and affordable genetic services; psychosocial support and counselling of carriers, patients and parents; reflection on ethical issues; and stimulation of research into causes, prevention and treatment of genetic disease, both monogenetic and multifactorial.
Services to consumers include inquiry responses and publications. Information on the Web site is primarily in Dutch, with an overview of the organization in English.
Keywords: Genetic disorders, Congenital abnormalities, Counseling, Ethics, Overseas organization, Support groups
