Meet our New Executive Director!
On behalf of the board of the Africa Albinism Network (AAN), we are excited to introduce Bonface Massah as the new Executive Director of the AAN beginning January 2025. With nearly two decades of experience in the disability rights movement in Malawi and across Africa, Bonface brings a wealth of knowledge to our team.
Bonface’s leadership will guide AAN through the next phase of growth, ensuring that we continue to serve the movement of persons with albinism (PWA) in Africa. We are confident that his expertise will strengthen our operations and further our mission to promote the well-being and inclusion of PWAs.
Let’s warmly welcome Bonface and stay tuned for exciting developments as we embark on this next chapter!
Thank you I.K.!
We would like to take the opportunity to express our heartfelt gratitude to the outgoing Executive Director of AAN, Ms. Ikponwosa “I.K.” Ero for her decades of tremendous service and sacrifice to the albinism movement, as well as to the broader human rights and disability movements, both globally and within the African region. Her vision, unwavering commitment, and lasting impact on the albinism cause are evident and will continue to inspire our work.
At AAN, we are immensely proud of her exemplary leadership in establishing and guiding AAN’s journey thus far. We earnestly look forward to her continued friendship and valued support as Senior Adviser as Bonface assumes the leadership at AAN.
Please join us in extending our warmest wishes to I.K. as she embarks on her next chapter, which we hope will bring new opportunities, fulfillment, and success.
ADVOCACY UPDATES:
Climate Change and Albinism Campaign Updates
- Kwame at COP29 in Baku
Our Advocacy Manager Kwame Andrews Daklo shares his reflections on attending the world’s largest climate change gathering. Kwame promoted the Petition (English, French, Portuguese) to the WHO to re-add sunscreen to the Essential Medicines List and supported the inclusion of the disability movement within UN climate negotiations. Watch a video on his reflections here.
Caption Left to Right: Mark Barrell, Director of Advocacy and Influencing at CBM UK, Kwame Andrews Daklo – Advocacy Manager at AAN, Mahbub Kabir – Advocacy & Inclusion Advisory Manager at CBM Ireland
Read the Blog in English, French, Portuguese
- WATCH: Webinar on Climate Justice for Persons with Disabilities: A Case Study of Persons of Albinism
On October 24, 2024, we collaborated with CBM Global, The Fund for Global Human Rights, and Climate Action Network (CAN) Europe to host a webinar on disability-inclusive climate policies and to launch the Petition to a wider global audience.
- Stories from the Frontlines
Meet three Human Rights Defenders with albinism from across the world fighting back against the harmful effects of climate change on persons with albinism in their communities.
- Read Nnene’s Story in English, French, Portuguese
- Read Simon’s Story in English, French, Portuguese
- Read Joselito’s Story in English, French, Portuguese
- Advocacy on the Radio!
In August 2024, we partnered with West Africa Democracy Radio (WADR) to produce and air a two-part radio program on Climate Change and Albinism in English and French as part of their weekly program titled “Enviroscope”, which brings to the fore topical issues affecting the agriculture sector, land exploration, and climate change.
Our Advocacy Manager, Kwame Andrews Daklo, features as the main speaker in the series. Other featured guests included:
- Aminata Traore – Founder and President of the Association of PWAs of Mali (AMPA)
- Dr. Folakemi Cole-Adeife – Consultant Dermatologist and Venereologist, Lagos State University Teaching Hospital, Nigeria
- Dr. Mamadou Gassama – Dermatologist, Bamako Hospital, Mali and, focal point for the care of persons with albinism
- Students with albinism from Liberia and Nigeria
Listen to Part 1: English, French
Listen to Part 2: English, French
- Africa Climate Change and Health Week 2024
We joined a week-long virtual advocacy campaign dedicated to addressing the health impacts of climate change across Africa. Click to read our post
- Watch: Climate of Concern (Short Film)
The film, produced by AAN, portrays the lives of two high school girls experiencing the harsh realities of living without access to sun protection measures like sunscreen.
This short film was funded by the Global GreenGrants Fund.
Watch the short film in English, French, Portuguese
Other Advocacy Updates
- Report to the Committee on the Rights of Persons with Disabilities (CRPD)
In July 2024, AAN submitted an Alternative Report on the Human Rights situations of Persons with Albinism in Ghana to the CRPD. The report provides a comprehensive overview of the challenges faced by persons with albinism in Ghana, including discrimination and lack of access to essential services.
Read the concluding observation of the CRPD Committee in Ghana: English, French, Portuguese
- Joint Alternative Report on the Human Rights Situation of Women with Albinism in Benin to the 89th Session of the CEDAW
In September 2024, AAN submitted a Joint Alternative Report on the Human Rights Situations of Women with Albinism in Benin to the 89th Session of CEDAW in collaboration with two albinism groups in Benin: Divine Connexion Worldwide and ONG Valeurs Albinos. The report reveals that despite existing laws, women with albinism in Benin experience extreme discrimination in education, employment, healthcare, and family life.
- AAN at the Pan African Parliament (PAP)
In September 2024, AAN was represented by Nontsikelelo Loteni, a South African Human Rights Defender with Albinism and Secretary of the South Africa National Albinism Task Force, to present on the rights of children with albinism during the Seminar titled “Agenda 2063 Fostering an Africa Fit for Children” at the PAP.
Center Left: Lefhoko Kesamang, Senior Social Welfare Officer at the AU Commission, and Far Right: Nontsikelelo Loteni
- Kwame at the African Union Working Group on Children with Disabilities
In September 2024, our Advocacy Manager, Kwame Andrews Daklo, attended the 7th meeting of the Working Group on Children with Disabilities of the African Committee of Experts on the Rights and Welfare of the Child (ACERWC), sitting in Lesotho. He co-presented a draft Guiding Note on reporting on children with albinism. The Guiding Note is an outcome of the ACERWC’s prior decision (as recommended by the UN Independent Expert (UNIE) on albinism) to develop a Guiding Note to assist African Union (AU) member states in reporting on children with albinism.
- Celebrating 10 Years of the UN Mandate on Albinism: Our Submission
The year 2025 will mark the 10th anniversary of the UN mandate on albinism. To commemorate this milestone, the Independent Expert’s thematic report to the Human Rights Council for 2025 will focus on the work and achievement of the mandate over the past decade including reflections on progress made in the realization of the rights of persons with albinism worldwide.
The Independent Expert launched a call for inputs, and in September 2024, AAN submitted a report incorporating inputs from albinism organizations including:
- Fundacao Joel Tchombosi (Angola)
- Association of Persons with Albinism in Malawi
- National Albinism Taskforce (South Africa)
- Albinism Society of Tanzania (TAS Morogoro)
- Albinism Foundation of Zambia
- Albinism Multipurpose Organisation (Zambia)
In October 2024, AAN also provided support to the UN Independent Expert for an online consultation workshop with albinism groups. The goal was to – in real time – reflect on the past decade’s achievements, address persisting challenges, and strategize for advancing the human rights for people with albinism globally over the next decade. The consultations were attended by albinism groups from Eastern, Southern, Western, and Northern Africa.
- Statement to the 81st Ordinary Session of the African Commission on Human & Peoples’ Rights (ACHPR)
In October 2024, AAN in collaboration with Under the Same Sun, presented a statement to the 81st Ordinary Session of the African Commission on Human and Peoples’ Rights (ACHPR) in Banjul addressing the human rights challenges of persons with albinism. The statement highlighted ongoing violence, discrimination, and climate-related risks, including heightened exposure to UV radiation often leading to skin cancer. The session urged African governments to implement the African Union Plan of Action on Albinism and to add sunscreen to their National Essential Medicines Lists.
Read the Statement (English Only)
- Roundtable Discussion on Access to Healthcare and Education for Persons with Albinism
In November 2024, our Advocacy Manager, Andrews Kwame Daklo, participated in a hybrid roundtable discussion on Access to Healthcare and Education for Persons with Albinism, hosted by the University of the Free State. This impactful event featured a dynamic lineup of speakers, primarily persons with albinism, who addressed key issues such as discrimination, healthcare access, and inclusive education.
In his presentation, Kwame highlighted the profound impact of climate change on the health of persons with albinism across Africa. He passionately advocated for the reinstatement of sunscreen on the World Health Organization’s Essential Medicines List, urging participants to support the petition. The event served as a powerful platform for raising awareness, fostering dialogue, and driving action to improve the lives of persons with albinism.
Should you be willing to contribute to future reports, please contact us at info@africaalbinismnetwork.org
AROUND THE NETWORK:
- AAN at NOAH Con 2024!
From July 11 to 14, AAN’s Executive Director, Ikponwosa Ero, and Project Manager Annabahati Gwacha presented a session with Under the Same Sun at the 2024 National Organization for Albinism and Hypopigmentation – (NOAH) Conference in California, USA. It was a transformative experience filled with insightful discussions, networking opportunities, and impactful sessions focused on advancing the rights and well-being of people with albinism globally.
Caption L-R: Annabahati Gwacha – AAN; Grace Wabanhu – Village of Hope Tanzania; IK Ero – AAN; Francis Tiangson – UTSS
Read about Annabahati’s experience in English, French, Portuguese
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Launch: “Out of the Shadows for Good” Project in Zambia
In October 2024, AAN launched the “Out of the Shadows for Good” project in partnership with and led by Cheshire Homes Society of Zambia and with the support of Liliane Fonds. The project will span three years and aims to work closely with albinism groups in Zambia to protect the rights of persons with albinism, combat stigma, and provide access to critical resources like justice, healthcare, and education.
Read the Blog in English, French, Portuguese
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Blog: Inclusive Design for Communications Professionals
Lubabatu Abubakar, AAN Communications Officer in the past year, writes about how she came to understand that for visual design to be inclusive, she had to challenge conventional design principles to make sure that people with visual impairments could engage meaningfully with visual content. We’re grateful for Lubabatu’s contributions to the Communications Department at AAN.
Read her Blog in English, French, Portuguese
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Blog: An Intern’s Reflections on Human Rights Advocacy
Mary Asuquo, an intern at AAN, shares her transformative experience during her time with us. From researching human rights violations to gaining a deeper understanding of the challenges faced by persons with albinism, Mary’s journey has been eye-opening. Through her work with AAN, she was inspired by the resilience and success of individuals with albinism who are trailblazers in media, sports, and social activism. We’re grateful for Mary’s contributions to the Human Rights Advocacy Department at AAN.
Read her Blog in English, French, Portuguese
- Participant reflection from AAN Women’s Learning Forum 2024: Gwenlisa’s Testimony
The 2024 Africa Albinism Network Women’s Learning Forum, held in Nairobi, celebrated leadership, resilience, and advocacy among women with albinism. Featuring leaders from 17 African countries, it emphasized personal development, psychological well-being, and human rights. Gwenlisa Mushonga, founder and Executive Director of Alive Albinism Initiative in Zimbabwe, a former participant, shares how spaces designed for women with albinism help foster self-confidence and unity.
(Blog written by our Partners at MotheringandAlbinism.com)
Interested in Exploring our Resource Page?
Check out our rich library of more than 500 resources, including French and Portuguese materials, and find ways to impact the albinism community positively.
IN OTHER DEVELOPMENTS:
- Attacks
Since our last quarterly newsletter in March 2024, new cases of attack have been reported in Tanzania. We condemn these crimes in the strongest terms and call for immediate protection measures, including the implementation of the AU Plan of Action on Albinism.
To report a case, fill out this form: AAN Incident Report Form in English, French, Portuguese
Download: New Case of Attack in English, French, Portuguese
- Report Release: Zambia Situational Analysis Study on Persons with Albinism
We are pleased to share the release of a groundbreaking study titled “Albinism & Rights in Zambia,” conducted by the Ministry of Community Development and Social Services with support from UNICEF and other key partners. This report explores the lived experiences of persons with albinism, their access to justice, education, and healthcare, and offers actionable recommendations to end stigma and discrimination.
- A Milestone Case for Persons with Albinism: Centre for Human Rights and Others v United Republic of Tanzania
On September 10th and 11th, 2024, public hearings took place at the African Court of Human and People’s Rights in Arusha, Tanzania, focusing on justice for victims and survivors with albinism in Tanzania.
The case was filed in 2018 by the Centre for Human Rights-University of Pretoria (CHR), the Institute for Human Rights and Development in Africa (IHRDA), and the Legal and Human Rights Centre (LHRC) against the government of Tanzania regarding widespread threats and violations of the rights of persons with albinism in the form of discrimination, persecution, humiliation, killings, and mutilations that have not been effectively prevented and/or redressed. A decision from the court is expected in the coming months.
IN THE SPOTLIGHT:
Congratulations to Tanzania for the historic adoption of its National Plan on Albinism titled “National Action Plan of Rights and Welfare of Persons with albinism” on the International Day of Persons with Disabilities on December 3rd, 2024 in Dar es Salaam, Tanzania. Hon. Dr. Doto Mashaka Biteko, the Deputy Prime Minister, presided over the launch as the guest of honor. This is an achievement that reflects the tireless advocacy of albinism and disability rights organizations in Tanzania and the Government’s commitment to inclusivity, equality, and the well-being of people with albinism. We would like to thank the NAP committee and our funding partners for enabling us to host several national workshops and forums to contribute to this process. Thanks too to all participants and counsel, amici, and funding partners of the African court case in Arusha in September this year. The case which was brought against the Government of Tanzania featured crucial submissions around the government’s delays in adopting the NAP and no doubt contributed to pushing adoption over the finish line. Photo credit: Standing Voice- Congratulations to Franck Hounsa, Language Liaison of the AAN, and current Founder and President of Divine Connexion Worldwide (DCW), for obtaining a Master in Translation Studies from the prestigious school ESIT (Ecole Supérieures d’Interprètes et de Traducteurs), at the University of Sorbonne Nouvelle, an internationally renowned university in France.
Congratulations to Human Rights Defenders: Lefhoko Kesamang and Mama Nomasonto Mazibuko: At its first-ever Women’s Learning Forum, held from May 28th to 30th, 2024, in Nairobi, Kenya, AAN honored Lefhoko Kesamang, Senior Social Welfare Officer at the African Union, and Nomasonto Grace Mazibuko, the Deputy Chairperson of the Commission for Gender Equality in South Africa, with honorary awards celebrating their legacies, decades of service, and advocacy for the rights and well-being of people with albinism in Africa. Read the Blog in English, French, Portuguese - Congratulations to Oluwasina Gbemisola Hephzibah for Graduating with a BSc in International Relations from Coventry University, Nigeria as the overall 2nd best graduating student with an outstanding CGPA of 4.97/5.00. Gbemisola works as a content strategist, writer, and editor for physical product businesses.
- In August 2024, Heads of States and Governments of the Southern African Development Community (SADC) took a significant step forward by addressing the challenges faced by people with albinism at the 44th Ordinary Summit in Harare, Zimbabwe. The Summit adopted and signed the Declaration on the Protection of Persons with Albinism, signifying the collective resolve of SADC Member States to take necessary measures at the regional and national levels. Read the Declaration (English Only)
AAN Wishes you a Happy Holidays!
As the year draws to a close, AAN (board and personnel) would like to thank all our funding partners and collaborators for supporting another successful year advocating for the protection and promotion of the human rights of persons with albinism.
With your continued support, we embrace the coming year with renewed hope and determination to fulfill our mission to promote the rights, wellbeing, and inclusion of people with albinism in Africa through advocacy, capacity development, and collaboration.
WE NEED YOUR SUPPORT.
Your gift will help AAN support albinism groups and human rights defenders with albinism through capacity development so they can protect themselves from harm and access their rights to justice, health, and inclusion.
A gift of any amount will help and is a show of solidarity. Together, we can build an inclusive world for persons with albinism, free from brutality and discrimination. Donate here
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