Support groups for patients with genetic disorders and their families.
In conclusion, those working in pediatric clinics owe it to themselves to know about the relatively new team member, the genetic support group. As the human genome becomes less mysterious to professional and patient alike and as its demystification creates an ever-increasing number of ethical and social dilemmas, consumers and professionals, interested perhaps for different reasons in finding treatment and cure, must work together as partners. Availability of medical care for the family who must cope with a genetic disorder is only one part of the total health picture. Access to communication with and compassion of one family with another family, of one child with another child, of one parent with another parent, within a support group of caring persons, proves one of the most meaningful medical tools that pediatricians can offer their patients. Those working within the walls of the pediatric clinic are in a crucial place to address the comprehensive needs of families with genetic disorders and to identify the role of the genetic support group in a treatment plan.
Weiss
J O
JO
Alliance of Genetic Support Groups, Washington, DC.
D030342:Genetic Diseases, Inborn / Q000523:psychology*; D049673:History, 20th Century; D006801:Humans; D009656:North America; D012657:Self-Help Groups / Q000266:history / Q000458:organization & administration