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Changing perceptions of albinism in Africa

Project: Research

Description

In 2013 the Wellcome Trust funded a workshop organised by the PI to bring together ten researchers with expertise in various aspects of albinism in Africa. The award also funded the development of a website to provide information to people living with albinism, researchers and the general public: http://albinism-in-africa.com (under development). The group has since been consolidated through a series of meetings funded by a Knowledge Exchange Fellowship awarded to the PI from Lancaster University, with the objective of disseminating accurate and accessible information in order to challenge misconceptions about albinism in Africa.

The 2013 workshop concluded that there was a need to work more closely with various stakeholders in knowledge exchange and research activity. Albinism has long been studied from the outside, excluding people with albinism and those that support them. Thus the present application has involved stakeholders from the beginning, in the planning and design of a conference that will facilitate knowledge exchange among experts on aspects of albinism, while highlighting the benefits and practical applications of research to those supporting people affected by albinism. The decision to hold the event in Cameroon is intended to facilitate the participation of African partners.

The aims of the conference are to provide the opportunity for:

1) An exchange of knowledge and expertise between academics, researchers and medical professionals specifically interested in OCA2 in Africa;
2) The sharing of knowledge and experience of advocacy and education between a range of stakeholders;
3) The creation of sustainable links between researchers, clinicians and associations;
4) To facilitate the development of collaborative research and advocacy projects.


Organisation

The conference will take place over two days, each with a distinct focus and facilitated by the organising committee:

Day 1 has an academic / clinical focus and participants will share expertise on genetic and clinical understandings of albinism in a formal day of research papers and presentations. The invited speakers are experts in fields including cell biology, genetics, ophthalmology and dermatology. This is an opportunity to disseminate up to date research findings and expertise on albinism, which is difficult to access in much of Africa, while the day will afford a valuable networking opportunity for all participants, benefitting research and clinical practice.

Day 2 brings together NGOs, associations and academics with expertise in the socio-cultural aspects of albinism in Africa to allow for the sharing of knowledge and experience. The focus will be to engage people who represent and support people with albinism in research findings relevant to the health and wellbeing of their members and wider communities. The aim is to improve awareness and the ability of NGOs and association leaders to use academic evidence-based research to implement effective projects and initiatives. The day will include brief presentations (including summaries of Day 1), discussion forums and focus groups, enabling the sharing of expertise and the enhancing of communication between regional albinism associations.



AcronymChanging perceptions of albinism in Africa
StatusFinished
Effective start/end date5/01/154/08/15

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Activities

Press/Media

Research outputs