Links for Pregnancy/Loss/Grief Support

GriefNet
E-mail support groups for persons dealing with grief, death and major loss (includes support groups for both neonatal death and pregnancy termination)

A Heartbreaking Choice
A support group for parents who choose to interrupt a pregnancy after receiving a poor prenatal diagnosis (also includes a listserv)

The Hygeia Foundation
A comprehensive online community for families who have experienced pregnancy or neonatal loss, or who are caring for seriously ill neonates and children

A Place to Remember
A site that provides support materials and resources for those who have been touched by a crisis in pregnancy or the death of a baby

Subsequent Pregnancy After a Loss Support
A support network for bereaved parents who are currently pregnant, trying to conceive, or considering another pregnancy

Waiting with Love
For parents who choose to continue with a pregnancy after receiving a poor prenatal diagnosis and for families who learn their newborn will die



Links for Skeletal Dysplasia and Other Support Groups

The Luca John Foundation
An organization that supports families dealing with neonatal loss and gives medical research grants

Ellis-Van Creveld Support Group
A support group for families affected by Ellis-Van Creveld Syndrome

Ellis-Van Creveld Foundation
A self-help group for families in the U.K. affected by Ellis-Van Creveld Syndrome

Jeune's Syndrome Information/Support Network
A support group for families affected by Jeune's Syndrome

Osteogenesis Imperfecta Foundation
A national organization dedicated to helping people cope with the problems associated with osteogenesis imperfecta

Genetic Alliance
An international coalition of individuals, professionals and genetic support organizations that is working together to enhance the lives of everyone impacted by genetic conditions



Links for Skeletal Dysplasia Research/Medical Institutions

International Skeletal Dysplasia Registry, Cedars-Sinai Medical Center, Los Angeles, California
An international referral center for research into the diagnosis, management, and etiology of the skeletal dysplasias (primary audience is medical professionals)

Kathryn and Alan C. Greenberg Center for Skeletal Dysplasias, Johns Hopkins Medicine, Johns Hopkins University, Baltimore, Maryland
A center dedicated to the clinical research, medical care and education of persons with skeletal dysplasias

Skeletal Dysplasia Group at Kinderspital Zurich, University Children's Hospital, University of Zurich, Switzerland
An international referral center for the diagnosis and management of individuals with skeletal dysplasias