Report of the Second World Summit of Brain Tumour Patient Advocates - 2015
Han Manders (The Netherlands)
Dr Sonja Marjanovic (United Kingdom)
Dutch Braintumour Contactgroup hersenletsel.nl
RAND Europe
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Han Manders was born on 10th August, 1960 and is the proud father of two boys ages 27 and 22 years old. In 2003, he separated from the mother of his children due in part to behaviour and personality changes. In 2013, he married his current wife who has a son 27 years of age. In late 1995, Han was diagnosed with a neurinoma (acusticus neurinoom) and at the beginning of 1996 had surgery and radiotherapy. Soon afterwards he attended a meeting of Cerebraal, a contact group for people with a brain tumor where he immediately felt at home being amongst others who understood the disease. Within a short period of time he became involved with the organisation and is currently chairman of the contact group of brain tumor hersenletsel.nl. Han works as an ambulance driver in his region and beginning in September, reduced his workload from 100 per cent to sixty per cent in preparation of early retirement.
Dr Sonja Marjanovic is a Research Leader at the not for profit policy research organization RAND Europe. Sonja has over ten years of research and project leadership experience, with particular strengths in understanding the interface between health research and innovation policy and service delivery. Sonja’s research portfolio has a strong focus on examining how collaborative models of research and innovation contribute to improved healthcare services and what role different stakeholders and institutions have in determining innovation outcomes. Recent clients include the NIHR, NHS, Department of Health, Alzheimer’s Society, Roche, GlaxoSmithKline, Pfizer, Wellcome Trust and international foundations. Some examples of recent projects include evaluations of national health technology programmes and health innovation strategies, reviews of public private partnerships in the stratified medicine space, an analysis of quality of life indicators and their use in cancer care (ongoing), an examination of business models for web-enabled crowdsourcing platforms, evaluations of collaborative models of health research and innovation (e.g. CLAHRCs, BRCs, international capacity-building efforts), evaluations of leadership programmes in the health sector, and two recently completed studies on dementia research and innovation policy and workforce planning. Methodologically, Sonja specialises in realist evaluation, and is highly experienced in workshop facilitation, interviews, surveys, case-studies, scenarios and bibliometric analysis. Her academic background combines training in health innovation policy, management studies and molecular genetics. She received her PhD from Judge Business School, Cambridge University.
Deborah Maradini
(Italy)
Associazione Italiana Tumori Cerebrali ONLUS - AITC ............................................................. Deborah Maradini of Milan, Italy is a psycho-oncologist working with brain tumor patients, caregivers and healthcare provides since 2006. She works at the Neurological Institute Carlo Besta in Milan where she focuses on preventing healthcare burn out and work-related stress. She collaborates with AITC (Italian Brain Tumor Association), one of Italy’s most important patient organizations. Its mission is to support, help, collect and develop information and interest on this rare pathology.
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