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Showing posts from October, 2012

One Rb World

Earlier this month, we took part in a conference on retinoblastoma in global perspective. The One Rb World conference brought together people from Europe, North America, the Middle East, and several countries in Africa -- all working with Rb, or themselves touched by it. The participants were split roughly half and half between medical professionals and parents of children with Rb or Rb survivors (people who themselves had Rb as children). Most of the presentations during the 2 days of the conference were by doctors, but about half of the time was allotted for discussion, which gave space for testimonials and suggestions for improvements in the quality of care from parents and survivors. More than once, mothers wept telling their stories -- of the scepticism they'd encountered when first seeking help; of delays in diagnosis, and doctors' egos getting in the way of efficient care. One of the most memorable presentations was on the psychological effects of Rb treatment -- how the rep…