We are a group of researchers, people with albinism, NGOs, artists and writers who share an interest in albinism in Africa. The project team met at a conference on albinism at Lancaster University in September 2013.
Project team
Professor Robert Aquaron - Aix-Marseille University, France
Robert Aquaron started as a young professor of Biochemistry at the School of Medicine in Yaounde, Cameroon, in 1972. It was in Cameroon that he began his research on oculocutaneous albinism(OCA). He pursued this area of study after his return to Marseille in 1977 and continued his work in Morocco, Algeria, Democratic Republic of Congo, and numerous missions in Cameroon. He has presented widely at national and international meetings devoted to normal and abnormal pigmentation. He has published around 30 papers on this subject. He co-organized with Pr. A.Mouelle, (Cameroon) and C. Baker, (UK) the first international meeting on OCA in Africa, at Douala in July 2015.
Dr Charlotte Baker - Lancaster University, UK
Charlotte Baker is Senior Lecturer in the Department of Languages and Cultures at Lancaster University. She wrote her doctoral thesis on literary representations of albinism in francophone Africa at Nottingham University. Charlotte’s research now focuses on socio-cultural aspects of albinism, albinism and human rights, and questions of representation (broadly conceived). Her research has been funded by The Wellcome Trust and a Knowledge Exchange Fellowship from Lancaster University.
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Jon Beale - Standing Voice, UK
Jon Beale is Director of Development at Standing Voice, an NGO promoting the social inclusion of people with albinism in Africa. Jon has worked with a number of groups facing societal challenges including torture survivors, political detainees and people with albinism. Jon has a particular interest in the cyclical nature of trauma in society and developing strategies for managing the challenges associated with social ostracisation.
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Dr Jean Burke - Australian Catholic University
Jean Burke is a Senior Lecturer in social work at the Australian Catholic University, Sydney. She lived in Tanzania for more than a decade, and her research has focused on HIV, infant feeding, and lately on albinism, human rights and the media.
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John Chiti - Musician, Executive Director of Albinism Foundation of Zambia
John Chiti is the first person with albinism to come out in the lime light in Zambia. He is a talented, established musician who uses his music to promote the welfare of persons with albinism.
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Dr Gareth Dart - Worcester University, UK
Gareth Dart has specific interests in teacher education and special and inclusive education in the contexts of resource poor countries, particularly in southern Africa. He has spent a number of years involved in developing and running teacher education courses in in Botswana focussing on special and inclusive education. He continues to be involved in education projects in southern Africa such as Teacher Education in Sub-Saharan Africa (TESSA), and the experiences of learners with albinism in the region.
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Médard Djatou - Bochum University, Germany
Medard DJATOU is a Cameroonian anthropologist and Research Assistant at the Chair of Social Anthropology, University of Bochum, Germany. He carried out many researches related to sociocultural perceptions of persons with albinism in Cameroon and its impacts on them, and published articles related to various aspects of that vulnerable and marginalized group. The mechanism developed by that human group to cope with their hostile living conditions in Cameroon is his main research interest nowadays.
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Tjitske De Groot -Vrije Universiteit Brussel, Belgium
D. Tjitske de Groot is conducting PhD research on the reduction of albinism related stigma in Tanzania at the Vrije Universiteit Brussel as a VLADOC (VLIR-UOS) scholar (2016-2020). Tjitske holds a Masters degree in Educational Science from the Vrije Universiteit Brussel and a Bachelors degree in Cultural Anthropology and Development Sociology from the University of Amsterdam.
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Dr Patricia Lund - Coventry University, UK
While working as an expatriate lecturer in genetics at the University of Zimbabwe in the early 1990s I initiated a project investigating the inherited condition oculocutaneous albinism. Since then I have explored genetic, health, educational and social issues surrounding albinism in southern and central Africa, where this condition has a high frequency. My motivation is to provide the evidence base to inform policy and attitudes to albinism, from ministerial to village level, with the goal of improving the quality of life for this vulnerable group.
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Boniface Massah - The Albino Association of Malawi (TAAM)
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Yvonne Matuturu - UNESCO, Cameroon
Mrs Yvonne MATUTURU is a Programme Specialist coordinating the implementation of the Social and Human Sciences projects and programmes in the ten central african countries covered by UNESCO Multisectoral Regional Office for Central Africa based in Yaoundé-Cameroon. She served UNESCO since 2004 in the Bujumbura office managing the social and human sciences programme and then Head of the UNESCO Bujumbura Maison de la Paix from 2012 to May 2016.
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Dr Lluis Montoliu - CSIC Research Scientist, Spain
Lluis Montoliu is a geneticist based in Madrid, Spain, at the National Centre for Biotechnology, CNB-CSIC, where he has been leading his laboratory since 1997. His laboratory is interested in understanding how genes are organized within mammalian genomes and the relationships between genes and rare diseases. Since 2009 his group is leading the albinochip project, aiming to genetically diagnose all people with albinism in Spain. He is a founding member of ALBA (www.albinismo.es), the Spanish association in support of people with albinism and co-chair of the Scientific advisory Committee of Albinism Europe (www.albinism.eu).
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