First Conference of the Worldwide Initiative on Social Studies of Haemoglobinopathies (WISSH), SICKLE CELL: THE NEXT 100 YEARS

Abstract

A multidisciplinary conference of social science researchers working on sickle cell and thalassemia attracted 80 delegates from ten countries and included psychologists, sociologists, nurses, counselors, social policy analysts, health economists, public health experts, as well as members of sickle cell nongovernmental organizations (NGOs). The purpose of the conference, held at De Montfort University in the United Kingdom (U.K.) in April 2010, was to apply quantitative and qualitative social research methods to understand the experiences of people living with sickle cell disease (SCD) or thalassemia, the contextual factors that can affect their individual well-being, and the health, educational, legal, and social policies that affect them. In particular, emphasis was placed on understanding the influences of “race” (as a social construct), class, and poverty on outcomes among people with sickle cell disease or thalassemia.