Services for haemoglobinopathies have been a major site of struggles for the black
communities, yet the social research literature on haemoglobinopathies remains patchy and …

There has been little systematic study of the impact of support groups on the psychological
well-being (PWB) of adolescents with sickle cell disease (SCD). Questionnaires …

Ultra rare disorders are being diagnosed at an unprecedented rate, due to genomic
sequencing. These diagnoses are often a new gene association, for which little is known …

This article explores interest in a support group among 218 individuals tested for a mutation
in BRCA1, a breast and ovarian cancer susceptibility gene. When queried 4 to 7 months …

Generic disorders can potentially interfere with interpersonal relationships and normal social
develop'ment as well as disrupt family life. As scientific and technological advances in …

Support groups have begun to take an active role in advocating for the planning,
development, and delivery of effective services for individuals and families affected by …

Focuses on the registration of individuals with predisposition for an inherited tumor
syndrome. Significance of periodic clinical screening of patients with familial tumors; Clinical …

Caregiver support groups are an intervention strategy that has been used extensively to
relieve stress and to help caregivers learn and use methods of coping. Support groups offer …

There are several different types of family-led organizations that provide support for family
members of children and youth with special health care needs, CYSHCN. Family-to-Family …

Generic disrnders can potendally interferc uith interpersonol relotionships and. nonnal
social deuelopment, as well as disrupt famill life As scientific and ech: lr, logicol oirorn, in r …