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Kenyan National Rb Strategy

More than 750 children develop retinoblastoma each year across the eleven countries constituting Eastern Africa:

Uganda DR Congo Rwanda Burundi

Sudan Ethiopia Eritrea Djibouti

The Need      Raising Awareness      Global Rb Strategy      Rati's Challenge          Rati's Challenge          Kenyan Rb Strategy          Guidelines           National Registry           Awareness Raising           Co-ordinated Care           Child Life Support           Family Support           Artificial Eye Service      Retinoblastoma Book     World Rb Citizen Award

Somalia Kenya Tanzania

Simple changes can dramatically improve cure and vision-saving outcomes for many of these children. We have chosen Kenya as an ideal site to develo a Model Retinoblastoma Strategy for Developing Countries.

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Kenya has a number of advantages as a development site:

Deep connections through John White, the father of our co- founder and Chief Executive.  Born in up-country Kenya, John was diagnosed with retinoblastoma in both eyes in 1946 Nairobi. Strategically placed at the heart of the Eastern Africa region.  A relatively stable economy, political history and health system. The capital city, Nairobi, has developed as a financial,  transport and aid centre for the region. A major hub for ophthalmology training in Africa, hospitals in Nairobi receive many retinoblastoma patients from neighbouring countries. An established Retinoblastoma Working Group at Kenyatta National Hospital.

Nairobi’s Retinoblastoma Working Group was founded in 2002 to try and forge a path towards optimal care.  However, progress has been limited by a small team already stretched by increasing demand for care, and no administrative support. The working group has now been joined by colleagues from across Kenya to form our Kenyan National Retinoblastoma Strategy Group.  The National Retinoblastoma Strategy aims to build a sustainable, locally managed retinoblastoma program, capable of effectively caring for children and their families from across Kenya, and the wider Eastern Africa region.   To achieve this goal, we are working with many different groups: • medical professionals (ophthalmologists, oncologists,    pathologists, pharmacists, nurses, social workers) • researchers in cancer biology, clinical studies, healthcare   delivery, social sciences, informatics and Best Practice   Guidelines • families • survivors • health advocates • community leaders • the business community • the media Our strategy explores a model with capacity for adaptation and implementation in diverse resource-limited settings throughout the world. Please visit the links below to find our more about the specific challenges faced in developing countries like Kenya, and the solutions to be developed within our Model Strategy. A systemic awareness campaign to achieve early diagnosis of retinoblastoma and prompt referral of children Best Practice Guidelines and professional development opportunities to stimulate common standards of care. A national retinoblastoma database to streamline medical record keeping and patient management and follow-up. Co-ordinated care to enable effective treatment.  This includes a central retinoblastoma pathology service to enable appropriate application of medical resources and effective post-operative care. Child life initiatives to enable effective psychosocial support, increase patient cooperation and reduce unnecessary medical costs. Structured family support to achieve greater access to appropriate care, and reduce burdens currently endured by many families. An artificial eye service to provide prosthetic eyes and supportive care for children who undergo removal of affected eyes, and to help challenge stigma that often prevent take-up of curative therapy.

Rati's Challenge          Kenyan Rb Strategy          Guidelines National Registry          Awareness Raising          Co-ordinated Care Child Life Support          Family Support          Artificial Eye Service

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