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 ResearchWhole-genome sequencing maps the genetics of albinism
A new study in npj Genomic Medicine used whole-genome sequencing to identify diverse genetic causes behind albinism and infantile nystagmus, offering clearer paths to diagnosis.
Africa FocusAllAfrica — AlbinismAU health summit in Accra faces test of commitment
African leaders gather in Accra to address sustainable health financing. Advocates say this summit must produce action, not declarations.
Africa FocusOHCHR — Independent Expert on AlbinismUN review documents ongoing threats to Tanzanians with albinism
A 2021 submission to the UN Universal Periodic Review recorded persistent killings, trafficking, and exclusion facing people with albinism in Tanzania.
Health & Sun ProtectionAllAfrica — AlbinismOn the Cape Flats, violence shapes everyday health
A report from South Africa's Cape Flats examines how chronic community violence functions as a public health crisis, affecting residents' daily lives.
Human RightsAmerican Journal of Human GeneticsResearchers map every possible AIRE protein variant
A new study has catalogued the effect of every amino acid change in the AIRE protein, offering a tool that could improve diagnosis of rare autoimmune conditions.
Myths & FactsPubMed — Albinism ResearchCan science replace myths about albinism?
A report from The Citizen asks whether genetic understanding can displace the superstitions that put people with albinism at risk across East Africa.
Health & Sun ProtectionPubMed — Albinism ResearchFish genetics offers new clues about albinism
Researchers used RNA sequencing on a cichlid fish to identify genes that control pigmentation — findings that may inform the broader science of albinism.
Human RightsAllAfrica — AlbinismHow inequality shapes pandemic risk for vulnerable communities
Structural inequality doesn't just worsen health crises — it creates the conditions that allow them to spread. People with albinism face compounding barriers when systems fail.
Human RightsAllAfrica — AlbinismPEPFAR cuts leave South Africa without a clear plan
The withdrawal of US PEPFAR funding has prompted urgent questions about HIV treatment continuity for vulnerable communities, including people with albinism.
Human RightsOHCHR — Independent Expert on AlbinismUN expert maps the global state of albinism rights
The OHCHR's Independent Expert on Albinism tracks discrimination, violence, and exclusion facing people with albinism across the world.
Health & Sun ProtectionAllAfrica — AlbinismTanzania invests 1.73 trillion shillings in health infrastructure
The number of health facilities in Tanzania has grown by 3,530 over five years. The expansion raises questions about equitable access for people with albinism.
Health & Sun ProtectionJournal of Investigative DermatologyGene discovery sheds light on skin immune cells
Researchers have identified a transcription factor that shapes the identity of Langerhans cells, the immune sentinels living in skin. The finding may have implications for conditions involving pigmentation and skin immunity.
Education & InclusionGoogle News — AlbinismUganda to expand child disability support across 27 districts
The Ugandan government plans to roll out a child disability assistance programme in 27 districts, extending support to children with conditions including albinism.
Human RightsOHCHR — Independent Expert on AlbinismGrace Mumbi Ngugi speaks for herself at the UN
The UN Office of the High Commissioner for Human Rights has published a profile of Grace Mumbi Ngugi, a person with albinism featured in its advocacy series.
Human RightsOHCHR — Independent Expert on AlbinismUN adopts declaration to protect people with albinism
The UN's Independent Expert on Albinism has backed a formal declaration outlining protections for people with albinism worldwide. It marks a significant step in international human rights law.
Human RightsOHCHR — Independent Expert on AlbinismUN report maps rights of people with albinism who migrate
A UN expert's report finds that people with albinism face compounded risks when they migrate, including reduced access to sun protection and heightened exposure to violence.
Human RightsOHCHR — Independent Expert on AlbinismUN reviews Uganda's record on albinism protections
The UN's Universal Periodic Review examined how Uganda is protecting the rights of people with albinism. Key concerns remain unresolved.
Human RightsOHCHR — Independent Expert on AlbinismUN human rights office publishes albinism community stories
The OHCHR Independent Expert on Albinism has gathered firsthand accounts from people with albinism around the world. The collection documents lived experience across health, safety, and belonging.
Real StoriesOHCHR — Independent Expert on AlbinismDr Murray Brilliant on living with albinism and science
Geneticist Dr Murray Brilliant has spent decades studying pigmentation — and has albinism himself. The UN's Independent Expert profile offers a rare self-portrait.
Real StoriesOHCHR — Independent Expert on AlbinismA pharmacist in Chile lives with albinism on her terms
Mafalda Soto Valdés works as a pharmacist in Chile. Her account, published by the UN Independent Expert on Albinism, describes the daily adjustments her condition requires.