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Daisy's Eye Cancer Fund has initiated a Global Retinoblastoma Strategy aimed at improving care for all affected children and their families.

The Need      Raising Awareness      Current Projects           Guidelines           Model Strategy for          Resource Poor          Countries           World Registry           Research Group      Rati's Challenge      Rb care in Africa      Retinoblastoma Book      World Rb Citizen Award

96% of children with retinoblastoma are cured in developed countries today, many retaining useful vision.  However, 92% of affected children live in less economically developed countries, where awareness and resources are limited.  Consequently, global survival is only approximately

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20%.  In some countries this may be lower than 10%. We are currently developing a Global Retinoblastoma Strategy to help optimise available resources around the world.  This organised approach focuses on advancing:           • Education           • Clinical care.           • Family support           • Research. The strategy consists of four projects, each of which is based on innovations that have emerged from global collaborations of parents, patients, survivors and professionals. Design of best practice guidelines will encourage fast tracked referral, access to optimal care at specialist centres, and supportive care for the affected child, carers and the whole family unit.  Guidelines already developed in the UK and Canada can be adapted for use in other countries. The Model National Strategy for Developing Countries will implement simple key changes that can dramatically reduce mortality in most developing nations.  The World Retinoblastoma Registry will achieve a fuller understanding of global retinoblastoma patterns, assess access to care and response to available therapies, and empower appropriate application of resources. The World Retinoblastoma Researchl Group will overcome challenges posed by the small numbers of children cared for at hospitals widely dispersed around the world.  Collaborative multi-centre clinical trials and research studies will validate current and new treatments, and advance the knowledge base. Through these four approaches, we can be optimistic that, for retinoblastoma, many important changes can be rapidly effected to shift global survival and vision outcomes closer to those  achieved in resource-rich countries.  Death from retinoblastoma can be substantially reduced in developing countries, without additional expensive resources.

Find out more about these four projects of the Global Retinoblastoma Strategy           Best Practice Guidelines           Model Strategy for Resource Poor Countries.          World Registry           World Retinoblastoma esearch Group

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