Global Albinism Alliance

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Global Albinism Alliance đź’™ Empowering albinism organisations to protect and advance the rights of people with albinism worldwide.

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

Albinism is gaining more space in dermatology conversations. đź’™At EADV, a key meeting point where dermatologists, researc...
05/10/2026

Albinism is gaining more space in dermatology conversations. đź’™

At EADV, a key meeting point where dermatologists, researchers, patient organisations, and health experts exchange knowledge. We were glad to see albinism and the broader burden of skin diseases receiving greater attention.👇

Among the many discussions at EADV, two sessions were especially important for advancing knowledge about albinism.

👉 The first was the session on pigmentary disorders and hypopigmentation, where F***y Morice-Picard presented the latest evidence on inherited hypopigmentation disorders, including genetics, syndromic forms, pigmentation diversity, and skin cancer risk in people with albinism.

👉 The second was the presentation “Albinism in Tanzania and Malawi,” where Dr Hafidh Hassan and Dr Esther Mzumara highlighted barriers to prevention, screening, and care, and the role governments can play in addressing them.

For the GAA, these moments also reflect the value of sustained advocacy: building relationships with clinicians and researchers, creating opportunities for exchange, and helping ensure that albinism is part of wider dermatology conversations.

They also reinforced the importance of the European Albinism Research Coalition, an initiative we are developing with Dr Roberto Mazzetto and 22 medical teams across Europe to strengthen research, data, and collaboration on albinism.

Thank you to the partners, clinicians, researchers, advocates, and patient organisation leaders who continue to include albinism in these conversations. 🙌

01/10/2026

To every doctor and researcher working to improve the lives of people with albinism: thank you.

Dermatologists.
Ophthalmologists.
Geneticists.
Surgeons.
Researchers.

From major hospitals and research centres in the Global North to isolated and under-resourced areas in Africa, South America, Asia, and beyond.

Thank you for showing up for people with albinism.
Thank you for focusing on albinism when it is still too often overlooked.
Thank you for helping advance care, research, prevention, diagnosis, and dignity.

It truly means a lot. đź’™

Photo & Video: Standing Voice, The Noble Hands Zimbabwe Trust, AlbĂ­na

What has the Global Albinism Alliance been working on over the past four months? We met with communities and albinism or...
17/09/2026

What has the Global Albinism Alliance been working on over the past four months?

We met with communities and albinism organisations across Africa, Asia, and North America as well as people exploring how to start new albinism organisations in their own countries.🙌

We engaged in global health discussions on rare diseases, skin health, and UV radiation protection through the World Health Assembly, WHO radiation and health meetings, and the 26th International Pigment Cell Conference.đź’Ş

We launched a WhatsApp Community for albinism organisations to connect, exchange information, and learn from one another. The community includes groups in English, Spanish, French, and Portuguese.đź’¬

We also promoted albinism awareness through the Proudly in My Skin campaign, created with the UN Independent Expert on albinism Muluka-Anne Miti-Drummond, Hon.Dlaws, and by publishing interviews with advocates sharing their work and lived realities. ✊

Finally, we released our 2025 Activity Report, documenting a year of advocacy, research, community engagement, and global collaboration.đź’™

Read more in our latest newsletter:đź”—link in the first comment.

10/09/2026

Children with albinism need reasonable accommodations at school.

“You have to read more slowly because you have to hold the paper closer. If you’re writing, you’re trying to stay on the line, so you have to go more slowly too.” - Carol

Albinism affects vision in several ways. 👀 It influences the development of the fovea, the part of the retina responsible for sharp central vision. In most cases, it is also associated with nystagmus and photophobia — features that cannot be fully corrected with glasses or surgery.

In practice, this can mean difficulty reading from the board or textbooks, learning to write, participating in ball sports or fine motor activities, and even recognising classmates or teachers from a distance.

So what should reasonable accommodations look like? They should start with listening to the child and understanding their individual needs.

Support may include assistive technology, tablets, enlarged materials, seating at the front of the classroom, being allowed to move closer to the board, adjusted lighting, reduced glare, extra time, or simple changes such as saying your name first so the child can recognise you. đź’™

🙌 Let us know in the comments what reasonable accommodations mean to you.

03/09/2026

“Putting me at the front of the classroom changed everything.” 💙

For Peter, one simple accommodation opened the door to learning. As a child with albinism and low vision, he struggled to see the chalkboard. After his father advocated for him, the school moved him to the front of the classroom.

Everything changed. Peter could follow the lessons, complete his assignments, and show his teachers and classmates what he was capable of. Some of the children who had once believed harmful myths about him became his friends — and even corrected those myths at home.

As a new school year begins in many parts of the world, this story is an important reminder: children with albinism need informed teachers, reasonable accommodations, protection from bullying, and families who are supported to advocate.

Even a small adjustment, such as sitting at the front of the class, can change a child’s confidence, learning, and sense of belonging. 🎓

Share this with a parent, teacher, or school leader.

How can we best support children in school? đź“–This is a question parents around the world ask themselves. For parents of ...
26/08/2026

How can we best support children in school? đź“–

This is a question parents around the world ask themselves. For parents of children with albinism, it can be especially challenging. Sun protection, reduced visual acuity, photophobia, bullying — these are just some of the challenges that albinism can add to school life.

Laura grew up in New York and, as she says: “School wasn’t easy for me. I faced a lot of bullying and exclusion, which made it emotionally challenging. Because of this, I wasn’t a very good student at the time.”

Now an educator and mindfulness expert, Laura helps parents and teachers build inclusive spaces where children with albinism can grow with confidence and thrive. đź’™

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

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

đź’™ Our 2025 Annual Report is out.From scientific collaboration and human rights advocacy to skin cancer prevention, globa...
12/08/2026

đź’™ 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. đź’«

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..

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