Evenings with Genetics: Community Partnerships Importance in Demystifying Genetic Care and Education
Susan D. Fernbach, RN, BSN, Lorraine Potocki, MD, John W. Belmont, MD, PhD, Carlos A. Bacino, MD, Debra Freedenberg, MD, PhD, Arthur L. Beaudet, MD
Introduction Families and healthcare professionals indicate gaps in genetic knowledge and genetic and disability resources and often indicate a poor understanding of causes, diagnosis, treatment and research for genetic conditions. Families frequently do not know trusted sources of information and feel isolated in their search for current information even after a genetic evaluation. This program has worked to partner and collaborate with community leaders to provide education, resources and a hub for information for families impacted by a genetic disorder.