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.
Health & Sun ProtectionPubMed — Albinism ResearchWhat albino caterpillars reveal about pigmentation genes
A 2021 study compared gene expression in albino and normally coloured caterpillars, identifying pathways that may deepen understanding of pigmentation loss across species.
Human RightsOHCHR — Independent Expert on AlbinismUN expert urges Panama to act on albinism law
Panama passed landmark albinism legislation but has yet to implement it. The UN's Independent Expert is calling for immediate action.
Health & Sun ProtectionPubMed — Albinism ResearchCommon gene variants reshape how albinism is understood
A study published in Nature finds that widely shared variants in the TYR gene contribute more to albinism's genetic architecture than previously recognised.
Health & Sun ProtectionPubMed — Albinism ResearchPartial albinism in children shows wide genetic variation
A study published in Nature examines how partial albinism presents differently across children, finding significant clinical and genetic variability in diagnosis.
Health & Sun ProtectionPubMed — Albinism ResearchBison genome study pinpoints a gene behind albinism
Texas A&M researchers mapping the bison genome have identified the specific gene responsible for albinism in the species, adding to broader scientific understanding of pigmentation.
Human RightsOHCHR — Independent Expert on AlbinismOHCHR Independent Expert issues statement on albinism
The UN's Independent Expert on the enjoyment of human rights by persons with albinism has released a formal statement. Full details are available via OHCHR.
Health & Sun ProtectionOHCHR — Independent Expert on AlbinismUN report links skin cancer risk to health rights
The UN Independent Expert on Albinism finds that skin cancer among people with albinism is a human rights issue, not only a medical one.
Real StoriesGoogle News — AlbinismXueli Abbing, from orphanage to Vogue's pages
Born with albinism and left at a Chinese orphanage, Xueli Abbing is now an international model and advocate working with Vogue and UNICEF.
Africa FocusGoogle News — AlbinismTanzania's people with albinism targeted by superstition-driven trafficking
ENACT Africa reports that people with albinism in Tanzania face ritual killings, live burial, and trafficking networks rooted in false beliefs about their bodies.
Health & Sun ProtectionJournal of Investigative DermatologyNew microscopy technique maps living skin without dyes
A fluorescence lifetime imaging method can now distinguish collagen from elastin in living human skin, with no dyes or biopsies required.
Human RightsGoogle News — AlbinismTanzania Continues to Face Challenges in Protecting Citizens with Albinism
Despite legal protections, trafficking and violence against people with albinism remains a serious concern in Tanzania, requiring ongoing advocacy and enforcement.
Human RightsOHCHR — Independent Expert on AlbinismUN Report: Kenya Makes Progress in Albinism Rights but Challenges Remain
UN Independent Expert on Albinism finds Kenya has made significant progress in protecting rights of persons with albinism, though barriers persist.
Health & Sun ProtectionOrphanet Journal of Rare DiseasesThe Case for Genomic Testing in Rare Eye Diseases: European Network Advocates for Access
The European Reference Network for Rare Eye Diseases (ERN-EYE) calls for wider access to genomic testing, which could benefit many people with albinism.
Human RightsUNHCR AfricaUNHCR Provides Support for Young People with Albinism in Congo
The United Nations Refugee Agency has launched assistance programs for young Congolese people with albinism, addressing protection and health needs.
Human RightsGoogle News — AlbinismNavigating the challenges: The reality of living with albinism in South Africa
An exploration of the daily challenges faced by people with albinism, highlighting the need for greater awareness and support systems.
Human RightsOHCHR — Independent Expert on AlbinismUN Committee Reports on Disability Rights in Lesotho and Other Nations
The UN disability rights committee has published findings on five countries, highlighting progress and challenges for persons with disabilities, including those with albinism.
Health & Sun ProtectionOrphanet Journal of Rare DiseasesNew Study Reveals Impact of Rare Genetic Conditions in India, Including Albinism
A 22-year analysis from a major Indian medical center highlights the significant healthcare burden of rare genetic disorders, including albinism, and calls for better support systems.
Real StoriesGoogle News — AlbinismLaurens Community Rallies Support for Twins with Ocular Albinism
A South Carolina community comes together through a fundraiser to support young twins with ocular albinism, highlighting local solidarity and awareness.
Real StoriesReuters Health (Albinism via Google News)Beauty Pageant Celebrates and Affirms Dignity of People with Albinism
A special pageant is helping people with albinism reclaim their dignity and challenge stereotypes through celebration of beauty in diversity.
Real StoriesAlbinism Life Podcast (Albinism Fellowship UK)Living Independently with Albinism: Musician Ben Shares His Journey
Ben, a drummer pursuing a professional music degree, opens up about independent living, navigating challenges, and finding humor in daily experiences with albinism.