Siblings of children with a chronic illness are among the close family members impacted by
childhood chronic illness. Family roles, routines, and functioning are adjusted to fit the needs …

OBJECTIVES: Communicating genetic risk is a distressing process for families affected by
inherited genetic conditions. This systematic review identifies and explores the challenges …

European genetic testing guidelines recommend that healthcare professionals (HCPs)
discuss the familial implications of any test with a patient and offer written material to help …

Methods The Delphi Consensus Initiative presented here is focused on how to reduce the
time to diagnosis of DMD. The development process for this initiative is summarized in …

Abstract Families often express difficulty to their providers and request guidance regarding
the task of communicating with children about potential adult‐onset inherited cancer risks …

Background Research suggests children with genetic disorders exhibit greater coping skills
when they are aware of their condition and its heritability. While the experiences parents …

Transition from pediatric to adult care poses challenges for adolescents with sickle cell
disease (SCD). This study explored the transition perspectives of adolescents with SCD …

Background Epidermolysis bullosa (EB) is an inherited genodermatosis that results in
mucocutaneous fragility. There is a lack of data on the impact of this disease on parents …

Objective To develop a theoretical model to explain how parents think about the process of
communicating with their affected child about the psychiatric manifestations of 22q11DS …

Purpose Women carrying the mutated BRCA gene, have approximately an 80% life-time risk
of developing breast cancer with 50% risk of their children inheriting the gene mutation …