Albinism in Africa: 18 months of mobilization with the APPASAAS project

Sharing information through local media helps disseminate verified knowledge about albinism and raise awareness of the challenges faced at the national level.
APPASAAS project presentation workshop in Antananarivo (Madagascar).

12/05/2025

Officially launched in October 2023 following co-funding approval from the French Development Agency, the project to improve protection, prevention and access to healthcare for people living with albinism in sub-Saharan Africa (APPASAAS) is continuing its roll-out in Côte d’Ivoire, Madagascar, Niger, Uganda and the Democratic Republic of Congo.

Origins and general overview of the project

The project grew out of consultations with local associations, public institutions and NGOs, which highlighted the need to strengthen the capacity of associations and coordinate efforts with national authorities to ensure comprehensive care for people living with albinism.

This initiative has three main objectives:

• Enhance the impact of associations representing people with albinism by supporting their structure and networking efforts;
• Strengthen the dissemination of information to improve guidance and care;
• Contribute to advocacy for the implementation of national policies to protect people with albinism.

Why focus specifically on people with albinism?

First and foremost, we want to support a vulnerable population facing serious health challenges. They lack melanin, so are extremely sensitive to sunlight and are at high risk of developing skin cancer. Albinism also affects eye health, often resulting in visual impairments, including low vision. The scarcity of data and dedicated funding for albinism is an obstacle to accessing appropriate care.

Numerous myths and beliefs surround this genetic condition and threaten the human rights of those living with albinism. Deep-rooted prejudices lead to discrimination and exclusion across education, employment, healthcare and public life. In some contexts, these beliefs even fuel acts such as physical assaults, mutilations, kidnappings and murders. NGO reports recorded over 700 attacks in the first half of 2024 alone.

The combined impact of gender and disability-based discrimination makes women and girls with albinism particularly vulnerable to various forms of violence and insecurity. Myths about albinism, which remain widespread, can encourage people to have sexual intercourse with a woman – or even a girl – with albinism to cure themselves of HIV/AIDS and bring good luck. As a result of these beliefs, they face a heightened risk of sexual violence and unwanted pregnancies, and of contracting sexually transmitted diseases.

What has happened since the project launch?

Meetings and selection of the nine partner associations

The mapping missions carried out in the five countries allowed for meetings with the various stakeholders engaged in improving the living conditions of people living with albinism. These encounters deepened our understanding of key actors in the field and how their networks are structured, while also providing clearer insight into the local challenges. These initial exchanges laid the foundations for a strong relationship with the local associations and authorities, and created a collaborative framework conducive to ongoing dialogue.

From the very outset, local organizations representing people with albinism were placed at the heart of the initiative. These patient-led associations implement a wide range of actions to raise public awareness about albinism, promote protective practices among affected individuals, advocate with authorities, and provide or refer individuals to appropriate healthcare services. Through a participatory selection process, nine partner associations were identified. They now benefit from tailored support to strengthen their activities, expand their impact and influence public policy.

These organizations serve as the voice of people with albinism (PWA) in their respective countries:

Côte d’Ivoire

• Bien-être des albinos de Côte d’Ivoire [Welfare of Albinos in Côte d’Ivoire] (BEDACI)
• Fédérations des associations et organisations pour le bien-être des albinos de Côte d’Ivoire [Federation of Associations and Organizations for the Welfare of Albinos in Côte d’Ivoire] (FAOBEA-CI)

Madagascar

• Albinos Madagascar

Uganda

• Albinism Umbrella
• Source of the Nile Union of person with albinism (SNUPA)
• Women and children with albinism in Uganda (WACWAU)

Niger

• Association nationale des albinos du Niger [National Association of Albinos in Niger] (ANAN)

Democratic Republic of Congo

• Organisation pour le bien-être des albinos du Congo [Organization for the Welfare of Albinos in Congo] (OBEAC)
• Fondation Julio Levotre

Financial support for IAAD

Recognized by the United Nations since 2015 and observed annually on June 13, International Albinism Awareness Day (IAAD) provides an opportunity to organize awareness events and communication campaigns on albinism. Activities are held throughout the month of June to raise awareness, inform and mobilize the general public and the authorities.

To strengthen engagement and public knowledge of albinism, the APPASAAS project issues an annual call for initiatives to provide financial support for associations organizing IAAD-related events.

In 2024, ten associations received funding to organize key events in their communities: marching bands, awareness caravans, conferences, informative brochures and goodies, film screenings with discussions, skits, concerts, etc. These initiatives are part of a collective effort to improve living conditions and promote the rights of people with albinism. This international day of mobilization plays a key role in shedding light on the barriers that prevent the full enjoyment of human rights, and in demystifying albinism. Through their awareness and outreach work, associations help create a more inclusive and supportive environment for people with albinism.

Organizational self-assessment training

In the autumn of 2024, partner associations took part in a week-long training led by the Bioforce Institute on the theme of organizational self-assessment. One session was held in Côte d’Ivoire for the six French-speaking associations, and a second in Uganda for the English-speaking associations. In total, 18 association representatives were trained and equipped to carry out internal assessments of their organizations and to develop tailored capacity-building plans.

Over the course of five days, they examined their practices and operations: What are our strengths and weaknesses? What is our mandate? How is our governance structured? What resources and strategies do we have?

Supporting the structuring of these associations means giving them the tools to sustain their work over time and to increase the relevance of their field activities.

Testimonial from the president of OBEAC during the Bioforce training in Côte d’Ivoire, October 2024

Networking and experience sharing

In each country, exchange workshops were organized for associations representing people living with albinism to foster networking, skills development and the sharing of good practices. Themed work sessions tailored to local challenges were held to enhance cooperation among organizations, encourage reflection on current practices and build consensus on key priorities moving forward.

What’s next?

The momentum built during the first phase of the project will continue with co-organized exchange workshops and thematic sessions in all five countries. Time will also be set aside for sharing practices online, to support networking among associations across the continent involved in albinism projects and to strengthen their skills.

Technical and financial support for IAAD will be renewed, enabling associations to carry out impactful albinism awareness initiatives and take action around this key international day.

In May 2025, a regional exchange workshop will be held in Abidjan, bringing together association representatives from different countries to discuss mental health challenges. The sessions will explore mental health issues related to albinism, showcase replicable initiatives led by sector actors, and introduce tools for identifying mental disorders and correctly referring affected individuals. This event will also contribute to advocacy efforts by highlighting the often invisible, yet deeply damaging, consequences of human rights violations against people with albinism.

In the coming months, new awareness materials on albinism will be developed and made available to associations. These tools are designed to support the facilitation of outreach sessions and help ensure clear and lasting understanding of key messages by the public.