Archive
Stories, in full
A record of albinism news, research, and advocacy from trusted sources around the world. Reviewed by a human editor before publication.
Jane Kasweka
Livingstone, Zambia
Delphile Bandha
Livingstone, Zambia
Purity Kashweka
Livingstone, Zambia
Dorcus Siabasimbi
Livingstone, Zambia
Carolina Khaskelis from the United States is visiting Livingstone, Zambia, where she is spending time with members of the local albinism community, including Jane Kasweka, Delphile Bandha, Purity Kashweka, and Dorcus Siabasimbi. Alongside distributing essential sunscreen, Carolina is listening to their stories and learning more about their experiences, challenges, and hopes for the future.
Real StoriesGoogle News — AlbinismAlbinism SA Ekurhuleni keeps showing up for its community
The Ekurhuleni chapter of Albinism SA continues its local support work, according to a report in The Citizen.
Health & Sun ProtectionPubMed — Albinism ResearchPakistan researchers report breakthrough in albinism genetics
Scientists in Pakistan have identified new genetic variants linked to albinism, in findings that could improve diagnosis and deepen understanding of the condition.
Health & Sun ProtectionPubMed — Albinism ResearchRussian study maps genetic variants behind albinism
A new analysis of patients in Russia identifies the specific gene mutations driving most albinism cases, adding detail to a picture that varies across populations.
Africa FocusOHCHR — Independent Expert on AlbinismUN human rights office opens presence in Malawi
The OHCHR has established a presence in Malawi, bringing international human rights monitoring closer to a country where people with albinism face serious risks.
Health & Sun ProtectionAllAfrica — AlbinismTanzania urges regular health checks for all
Health officials in Dar es Salaam are calling on the public to embrace preventive care, arguing early check-ups reduce the cost of treating advanced illness.
Human RightsOHCHR — Independent Expert on AlbinismUN calls for input on albinism social development
The UN's Independent Expert on Albinism is gathering written submissions on the social development challenges faced by people with albinism worldwide.
Real StoriesGoogle News — AlbinismCoventry siblings on living visibly with albinism
Two siblings from Coventry describe what it means to move through the world with albinism — seen, recognised, and rarely anonymous.
Myths & FactsGoogle News — AlbinismWhite animals explained: albinism, leucism, and the difference
A new explainer from EarthSky separates albinism from related conditions like leucism — and clarifies what each term actually means.
Health & Sun ProtectionAmerican Journal of Human GeneticsIDUA gene variants linked to isolated retinitis pigmentosa
New research finds that low-activity variants in the IDUA gene can cause retinitis pigmentosa without the broader symptoms of mucopolysaccharidosis type I.
Health & Sun ProtectionAllAfrica — AlbinismWhy information alone fails in a health crisis
A new analysis argues that one-way messaging leaves communities behind. Listening, not broadcasting, is where effective health communication begins.
Health & Sun ProtectionPubMed — Albinism ResearchZebrafish study maps albinism gene's role in eye development
New research using zebrafish embryos shows how a key albinism-linked gene shapes the eye during early development, offering fresh clues for vision research.
Africa FocusReuters Health (Albinism via Google News)Malawi's child ID scheme raises privacy concerns
As Malawi rolls out national identity cards for children, advocates warn the programme may expose vulnerable groups — including children with albinism — to new risks.
Health & Sun ProtectionGoogle News — AlbinismZebrafish study links albinism gene to eye development
New research using zebrafish embryos shows how a key albinism gene shapes the eye during early development, offering clues to the vision differences common in albinism.
Health & Sun ProtectionAllAfrica — AlbinismUganda activists call for adolescent nutrition focus
Nutrition campaigners in Uganda warn that older children are being overlooked as health programmes concentrate on under-fives. Adolescents with albinism face particular dietary needs linked to skin and eye health.
Education & InclusionGoogle News — AlbinismA funfair in Akure puts inclusion into practice
An event in Akure, Nigeria, brought children with albinism together with their peers for a day centred on play and belonging.
Human RightsUN General Assembly NewsUN renews anti-racism push, 25 years after Durban
Member States adopted a new declaration at the General Assembly, reaffirming commitments made at the 2001 Durban Conference on racism and discrimination.
Education & InclusionAllAfrica — AlbinismGhanaian teenagers with disabilities picture their own futures
A new study asked adolescents living with disabilities in Ghana to document their own lives. Their images and words challenge what adults assume about their prospects.
Human RightsOHCHR — Independent Expert on AlbinismUN updates torture documentation manual to include albinism
The OHCHR has revised its core investigation manual to formally recognise attacks on people with albinism as a form of torture. The update marks a shift in how international law frames ritual violence.
Real StoriesAlbinism Life Podcast (Albinism Fellowship UK)Emma on travelling with albinism and low vision
In a new episode of Albinism Life, Emma speaks candidly about navigating travel with low vision — the practical challenges, the social ones, and the confidence built along the way.
Real StoriesAlbinism Life Podcast (Albinism Fellowship UK)Growing up with albinism in Nigeria and the UK
Teejay was born in Lagos and later moved to the UK to study. In a new podcast episode, he speaks about belonging, identity, and what it means to grow up with albinism across two very different countries.