Improving protection, prevention and access to health care for people with albinism in sub-Saharan Africa

BACKGROUND

The project aims to strengthen 8 albinism organizations in Côte d’Ivoire, Uganda, Niger, DRC and Madagascar, and improve the referral of people with albinism to holistic care adapted to their specific needs.

BACKGROUND

Albinism is a non-contagious, genetically inherited disease that occurs worldwide, regardless of ethnicity or gender. Based on existing data, it is estimated that its prevalence in Africa varies on average from one in 4,000 to one in 7,000 people. Albinism is generally characterized by the absence of melanin in the hair, skin and eyes, resulting in extreme vulnerability to the sun’s rays and a very high risk of skin cancer.In addition to these health impacts, people with albinism are subject to exclusion and discrimination, particularly directed against women and girls. Hundreds of attacks and rights violations have been recorded over the past 10 years (murders, mutilations, sexual violence, kidnappings, human trafficking, organ trafficking, desecration of graves, etc.). Finally, the visual impairments that affect people with albinism contribute significantly to their low school enrollment rates and high dropout rates, which aggravates their social exclusion and economic precariousness.

DESCRIPTION

The project will begin with a census and mapping of the structures and stakeholders working for people with albinism in the 5 target countries, in order to improve the knowledge of care services adapted to them and, ultimately, define a care pathway in each country.This will also provide an opportunity to identify the 8 albinism associations that will benefit from capacity-building and empowerment under the project. To this end, 2 representatives from these 8 structures, i.e. a total of 16 people, will take part in an organizational self-diagnosis training course to define their support and training needs more precisely.Several discussion workshops will be organized at national and regional level to promote the sharing of experiences and practices between albinism organizations and create synergies with civil society and associations active in the health, disability, education and human rights sectors. Based on these discussions, a “toolbox” will be developed and gradually distributed to meet the awareness-raising needs of people with albinism and their families, as well as medical and educational staff. To work with the latter, but also with community leaders and the relevant national authorities, “advisors” will be identified and trained in the use of these tools.Finally, to improve protection, prevention and access to health care for people with albinism more broadly and sustainably, public awareness campaigns will be deployed to disseminate scientific information on albinism and combat the spread of myths and misconceptions. At the same time, albinism associations will be trained in advocacy methods to lobby the authorities and encourage the definition and implementation of national policies to protect people with albinism.

OUTCOMES

Assistance and support for capacity-building and empowerment will be offered to 8 albinism associations, including at least one in each target country; 16 representatives will be trained to carry out an organizational diagnosis. Through a census and mapping exercise, the project will also inform and refer at least 10,000 people with albinism to appropriate care services. The training of 50 “advisors” to work with medical, paramedical and/or school staff will also help to improve care for albinism, as will the deployment of a national policy dedicated to this issue. A public awareness campaign will help to reduce acts of violence and discrimination.

PARTNERS

This project is the outcome of numerous discussions between the Pierre Fabre Foundation, its civil society partners and the various stakeholders working in favor of people with albinism, in particular during workshops and international meetings such as the Assises Africaines de Dermatologie, attended by some twenty representatives of albinism organizations from 14 African countries.Some of the national albinism partner associations were pre-identified during the project design phase. They will, however, be identified more precisely as part of the mapping process initiated at the start of the project. The aim is to improve our knowledge of the structures involved in this area and identify those wishing to take part in the initiative. The list of partners involved in the project will therefore be defined following this in-depth study of the stakeholders working for people with albinism in the 5 target countries.

CO-FINANCERS

44% of the project funding is provided by Pierre Fabre Foundation and 66% by the the Agence Française de Développement.