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From 2021 to 2023, the Africa Albinism Network (AAN) set out to test its mission to drive implementation of the Africa Union Plan of Action on albinism (AUPoA, 2021-2031) through National Action Plans (NAP) with multi-year budgets. The AAN is guided in this mission by the vision that people with albinism in Africa will take their rightful place throughout every level of society, and that the days of discrimination will be a faint memory.
During the two-year pilot phase, the AAN set out to support the development of NAPs in eight priority countries; and to drive human rights advocacy at the AU and UN to remind and steer government attention and actions toward implementation of the AUPoA/NAPs. Central to these goals is a strong partnership approach with albinism groups at the grassroots and a framework of co-executing as well as capacity development and coaching of albinism groups in areas of need. Our capacity development activities have often been led by people with albinism themselves, including albinism movement leaders who have been successful in various levels and forms of advocacy.
The pilot achieved significant gains. All eight priority countries were served at various levels including through 16 activities, a majority of which were multi-day collaborative activities. Six of eight NAPs have either been adopted or are on their way to adoption, whereas only three of eight were in this zone prior to the AAN’s support. At the AU and UN, 26 high-stakes human rights-based advocacy events have been conducted, and 52 albinism groups were actively engaged and supported either through NAPs or human rights-based advocacy.
The AAN also commissioned the first-known Pan Africa albinism survey to gauge the human rights-based advocacy priorities and strategies of 48 albinism groups across 23 African countries. In addition, a forum was held in Dar es Salaam to develop the capacity of 30 albinism groups in resource mobilization strategies and human rights-based advocacy.
The AAN also succeeded in developing an official structure such as the recruitment of 6 core staff from 4 African countries, Half of the AAN staff and advisory board members are people with albinism while others have significant experience working in disability rights and albinism in particular, with some also having lived experience as relatives of people with albinism. Women represent 67 and 75 percent of AAN staff and advisory board respectively. The AAN also developed a website featuring the sole resource bank on albinism in Africa; developed and implemented a communications strategy and an advanced technology-based method of work for its day-to-day operations and internal accountability structures.
Challenges during the pilot include those arising from working virtually as nearly all AAN staff work remotely. Examples include time differences and miscommunication. Other challenges centered around language barriers with some grassroots albinism groups, rancor among albinism groups in one country which negatively impacted the NAP development process, limited resources, and the need to keep fundraising while trying to implement objectives.
Despite the challenges, the AAN made significant strides in supporting and promoting the protection of people with albinism in Africa from discrimination and attacks. It is important that it continues along this path because the AAN is currently the only organization of its kind, promoting the right of people with albinism in partnership with their representative groups to implement the AUPoA/NAPs. Its impact has already been felt by people with albinism themselves who for this reason, repeatedly called upon the AAN in varied ways, in the Pan African Survey and feedback from AAN Learning Forum 2023, to continue to carry out its mission and vision in the years to come.