Delilah Xiong

Genetic counseling is a crucial process for patients and families either at risk for a rare disease or have already embarked on a diagnostic journey for a genetic syndrome. Genetic counseling provides three essential services for patients and families: Exploration of family medical and genetic histories in order to understand potential risk of a genetic syndrome or gene mutation. Crucial education and information about how genetic syndromes are inherited, the process of testing for and diagnosing syndromes, as well as the later management of life with a rare disease, as well as resources on preventing future occurrence and making the necessary connections with rare disease support groups, and communities. Counseling to help patients and their families understand the diagnosis they may face, the genetic, medical and psychological implications of a diagnosis on both the patient and rest of the family, and support for living with a rare disease.