SciELO - Scientific Electronic Library Online

 
vol.103 número12Attaining human dignity for people with birth defects: A historical perspectiveEthical issues and Huntington's disease índice de autoresíndice de materiabúsqueda de artículos
Home Pagelista alfabética de revistas  

Servicios Personalizados

Articulo

Indicadores

Links relacionados

  • En proceso de indezaciónCitado por Google
  • En proceso de indezaciónSimilares en Google

Compartir


SAMJ: South African Medical Journal

versión On-line ISSN 2078-5135

Resumen

HALL, J G. The role of patient advocacy/parent support groups. SAMJ, S. Afr. med. j. [online]. 2013, vol.103, n.12, pp. 1020-1022. ISSN 2078-5135.

Parent support/patient advocacy groups for rare genetic disorders have emerged as an important force. They provide information, encourage research (both by participation in research and by raising money for research), give families and affected family members the opportunity to learn from each other, and open the way for social and intellectual interaction between families, affected individuals, researchers and healthcare providers. New IT technologies increase the opportunities for collaboration and information exchange around the world. These groups have become an important resource for families, genetic counsellors and medical/clinical genetic professionals.

        · texto en Inglés     · Inglés ( pdf )

 

Creative Commons License All the contents of this journal, except where otherwise noted, is licensed under a Creative Commons Attribution License