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Global Albinism Alliance

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Global Albinism Alliance

💙 Empowering albinism organisations to protect and advance the rights of people with albinism worldwide.

Advocacy • awareness • research • support
Learn more: www.albinismalliance.org

19/08/2026

“Skin cancer is not only a medical issue. It is about whether people can live, learn, and work with dignity.” 💙

Willard’s work changed during the COVID-19 pandemic, when he met a 13-year-old girl with albinism working outside in extreme sun exposure, without protective clothing or a hat, and already living with wounds caused by UV radiation. ❤️‍🩹
That case made him and his team look more closely at daily life for people with albinism in rural Zimbabwe — and how skin cancer affects school, work, farming, mobility, and dignity.

Today, Willard and his team work with communities, health professionals, government departments, local leaders, and other partners to help prevent and manage skin cancer among people with albinism in Zimbabwe.

👉 Read Willard’s full story on our website.

12/08/2026

💙 Our 2025 Annual Report is out.

From scientific collaboration and human rights advocacy to skin cancer prevention, global health policy, and community connection, the GAA helped bring the priorities of people with albinism into spaces where decisions are made. 💫

This year included ISCA25, the 10th anniversary of the UN mandate on albinism, two WHA resolutions, the inclusion of sunscreen on the WHO Model Lists of Essential Medicines, the first World Forum on Skin Cancer in Persons with Albinism, and two in-person membership meetings.

Behind every milestone is a shared goal: dignity, health equity, safety, and inclusion for people with albinism everywhere.

Read the full 2025 Annual Report —🔗 link in the first comment..

06/08/2026

Kristina: “I don’t want other children to feel the way I did.”

Kristina experienced exclusion as a child growing up with albinism in the UK. 💙

By the time her parents took her to a local meeting of people with albinism, she already believed she knew what society thought of her. 😔 She saw other people who looked like her, but instead of feeling connected, she wanted to distance herself.

Now Chair of the Albinism Fellowship, Kristina speaks about the impact of albinism on mental health, why this is a global issue, why learning self-advocacy at a young age matters, and why good advocacy always starts with listening.

☝️Read Kristina’s full story on our website. 👉Link in the first comment.

29/07/2026

The latest issue of GAA Spotlight is here.💙

This edition brings together powerful updates from the global albinism community — from national action plans and community healthcare programmes to new research, IAAD activities, and opportunities for organisations.

Inside this issue, you will find stories and updates on:
✨ national action plans and policy developments
✨ community healthcare programmes
✨ IAAD activities
✨ new research and evidence on skin cancer prevention, stigma, mental health, access to services, and lived experience
✨ opportunities for albinism organisations to connect, collaborate, access resources, and strengthen their advocacy work

Thank you to everyone advancing dignity, safety, health equity, and inclusion for people with albinism around the world. 🌍

Read the full issue 👉 link in the first comment

Photo by Global Aid Missions from the clinical training in Zimbabwe, Fundación Piel de Luna Albinos de México A.C. and Albinismus from IAAD celebrations.

23/07/2026

The Global Albinism Alliance took part in the 3rd World Congress on Rare Skin Diseases, bringing the albinism perspective into a space for medical teams, scientists, patient representatives, policymakers, and industry actors. 💫

The GAA was represented by Elizabeth Beales, President of the Albinism Fellowship of Australia, and Galina Gening, President of Iris and Director of the Rare Eye Disease Centre at DocDeti Clinic.

Galina Gening delivered an important presentation on stigma, discrimination, bullying, sensory deprivation, low-vision rehabilitation, family and school awareness, psychological support, and the need for further mental health research. ✊

Thank you to Elizabeth and Galina for strengthening these connections. 💙

17/07/2026

“Nothing is impossible in advocacy.” 💙

Our Executive Director, Antoine Gliksohn, is featured in the latest RARE Skin edition of RARE Revolution Magazine, sharing the story of the Global Albinism Alliance and our work to strengthen visibility, protection, and policy change for people with albinism worldwide.

The article highlights the GAA’s advocacy on skin cancer prevention, including efforts to improve access to sunscreen, skin cancer screening, treatment, and evidence-based public health policies. 💫

For people with albinism, skin cancer risk is not an abstract issue. It is an everyday reality — and one that can be changed through coordinated advocacy, research, and global action.

Read the full article in RARE Revolution Magazine. Link in the first comment.👇

15/07/2026

“Even in parts of Europe, where people might think I would blend in more easily because of my pale skin, I still stood out.” 👨‍🦳

In our latest article, Patrick Wadula reflects on growing up with albinism across countries, including Tanzania, the United Kingdom, and Eastern Europe. His experience shows that stigma does not disappear simply because someone crosses a border. It changes form, but it can still affect identity, confidence, education, and inclusion.

His story also highlights why family support and accurate information matter from an early age, how discrimination can affect education and work, why skin cancer prevention must begin in childhood, and why unified advocacy led by people with albinism is essential to advancing dignity, health, and inclusion. 💙

Today, Patrick is a communications professional and advocate in South Africa, working to strengthen awareness, rights, and protection for persons with albinism. ✊

Read Patrick’s full story on our website. Link in the first comment.

11/07/2026

Albinism belongs in global conversations on rare conditions.💙

The GAA took part in the Rare Diseases International Membership Meeting in Nairobi, held in Africa for the first time. 🌍

Our Executive Director joined the panel “Leading Global Awareness & Advocacy,” contributing the perspective of the albinism movement.

Discussions covered the WHA Resolution on Rare Diseases, the action plan ahead, and an important question of language: across many rare communities, people prefer to say “condition” rather than “disease.”

✊ The GAA will continue advocating for inclusion that is accurate, respectful, and rooted in lived experience.

What language feels most respectful in your community?

30/06/2026

A shared commitment to stronger albinism advocacy in Nairobi.💪

Over two days in Nairobi, the Global Albinism Alliance met with people with albinism, community organisations, public institutions, and entrepreneurs to listen, learn, and discuss what stronger support could look like in Kenya.

On the first day, 15 participants shared their work and lived experiences, including representatives from Black Albinism, Albinism Society of KENYA, Ana Antami, Positive Exposure-Kenya, and the National Council for Persons with Disabilities.

The conversation highlighted persistent challenges: limited access to dermatology and mental health services, gaps in reliable data, barriers to employment, gender-based violence, and the need for safer livelihood opportunities for people whose work involves prolonged sun exposure. ❤️‍🩹

On the second day, we visited the National Council for Persons with Disabilities to learn about its Albinism Programme, including nationwide sunscreen distribution.

We also met two entrepreneurs with albinism whose businesses 🍄‍🟫🚐 show the importance of accessible and sun-safe livelihoods.

One of GAA’s core missions is to help albinism organisations around the world become stronger and more impactful.

Meetings like this help us understand local priorities, strengthen connections, and support community-led advocacy.

With thanks to Goldalyn from Black Albinism and Sherleen from Ana Antami for accompanying and supporting these important conversations. 💙

What support is most urgently needed for people with albinism in Kenya?

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