Search Results: MCH Organizations

Annotation: The Chromosome 18 Registry and Research Society is a nonprofit educational and research organization that locates people with chromosome 18 anomalies, educates families and the public on the prognosis and treatment of related disorders, links these families and their physicians to the research community, and encourages, conducts, and publishes research on topics that affect these families. The society maintains a database of families and interested persons, sponsors an annual conference, operates a parent network, and publishes a newsletter, Chromosome 18 Communiqué. The society sponsors a list service that is open to the public through their web site and also offers responses to inquiries from consumers.

Keywords: Chromosome 18, Chromosome abnormalities, Edwards syndrome, Genetic disorders, Health education, Listservs, Medical research, Medical research, Patient identification, Ring 18, Tetrasomy 18p

Annotation: The Support Organization for Trisomy 18, 13, and Related Disorders (S.O.F.T.) supports and educates families and caregivers of children with trisomy 18 or 13 and related trisomy disorders. The organization provides referrals, reference information and the following publications: Trisomy 18: A Book for Families, Trisomy 13: A Book for Families, Care of the Infant and Child with Trisomy 18 and Trisomy 13 and a bimonthly newsletter, SOFT Times. SOFT also provides some Spanish materials and sponsors conferences and workshops.

Keywords: Chromosome abnormalities, Edwards syndrome, Family support services, Genetic disorders, Health education, Patau syndrome, Support groups, Trisomy 6, Trisomy 13

Annotation: The Trisomy 18 Foundation provides research, advocacy and support programs and services for affected families expecting or caring for a child with Trisomy 18 so that in the future this chromosomal disorder will become a preventable and treatable condition and all parents have access to compassionate, knowledgeable care that respects the humanity of their child diagnosed with Trisomy 18. The foundation's mission is to guide the search for a cure and treatments, to educate and support medical professionals, and to create a caring worldwide community for affected families. The foundation provides inquiry responses, publications, reference materials, and a searchable database. Electronic newsletters and discussion forums are also available.

Keywords: Chromosomal abnormalities, Edwards syndrome, Support groups