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 …

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 …

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 …

Duchenne muscular dystrophy (DMD) is a severe, progressive, X-linked, recessive
neuromuscular disease that affects approximately 1 in 5000 live male births. 1 Patients with …

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

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 co** 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 …

The onset of deafblindness profoundly impacts both the individual with this condition and the
individual's family, including siblings. While current studies have primarily focused on the …

Background Epidermolysis bullosa (EB) is a painful genodermatosis presenting with skin
fragility and blisters. There is no cure; the prognosis is guarded and depends on the subtype …