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.
Human RightsOHCHR — Independent Expert on AlbinismUN Report Highlights Systemic Human Rights Challenges Facing People with Albinism
The latest UN Independent Expert report outlines persistent barriers to human rights for people with albinism worldwide and recommends concrete actions.
Health & Sun ProtectionOrphanet Journal of Rare DiseasesGenetic Testing Study Insights: What It Means for Prenatal Diagnosis of Albinism
A 14-year study from India reveals progress in prenatal genetic diagnosis of rare conditions, with important implications for families affected by albinism.
Human RightsOHCHR — Independent Expert on AlbinismUN Expert Calls for Better Employment Protection for People with Albinism
UN Independent Expert on Albinism urges greater alignment of laws and policies to enforce employment rights for persons with albinism globally.
Health & Sun ProtectionAmerican Journal of Human GeneticsResearch links ATG12 gene variants to neurodevelopmental disorders in people with albinism
New study in the American Journal of Human Genetics identifies genetic variants that may explain certain neurodevelopmental features in some people with albinism.
Health & Sun ProtectionJournal of Investigative DermatologyHalf of Global Survey Reports Pigmentary Disorders, Including Vitiligo and Albinism
A major global study of 48,000 adults across 34 countries reveals that 50% of people report having at least one pigmentary skin condition.
Health & Sun ProtectionJournal of Investigative DermatologyNew Method May Help Predict Atopic Dermatitis Flares Before They Happen
Research in mice identifies potential early warning signals for atopic dermatitis flares, which could benefit people with albinism who experience skin conditions.
Health & Sun ProtectionAmerican Journal of Human GeneticsNew Study Reveals Under-Testing for Hereditary Cancer in People with Genomic Variants
Research shows many individuals with actionable genomic variants meet criteria for cancer testing but remain untested, highlighting gaps in genetic screening practices.
Health & Sun ProtectionJournal of Investigative DermatologyStudy Shows Apremilast May Reduce Harmful Fat Linked to Heart Disease in Psoriasis
New research explores how the psoriasis medication apremilast might benefit heart health by reducing epicardial fat tissue in patients.
Health & Sun ProtectionJournal of Investigative DermatologyResearch Update: Funding Source Correction for Dengue Vaccine Study
Journal of Investigative Dermatology publishes important correction to acknowledge NIGMS funding in dengue vaccine skin reaction research.
Health & Sun ProtectionJournal of Investigative DermatologyNew Insights into Central Centrifugal Cicatricial Alopecia Affecting Women with Albinism
Recent research provides a deeper understanding of CCCA, a common form of scarring hair loss affecting women of African descent, including those with albinism.
Health & Sun ProtectionJournal of Investigative DermatologyGene Study Reveals New Insights into Hair Loss Condition Affecting Women of African Descent
Research identifies genetic factors in Central Centrifugal Cicatricial Alopecia (CCCA), offering potential pathways for treatment of this common condition.
Health & Sun ProtectionJournal of Investigative DermatologyUnderstanding Neurofibromatosis Type 1: What New Research Reveals About This Genetic Condition
A recent study in the Journal of Investigative Dermatology explores neurofibromatosis type 1, shedding light on its genetic mechanisms and manifestations.
Health & Sun ProtectionAmerican Journal of Human GeneticsNew Study Highlights Genetic Differences in Alzheimer's Disease Across Populations
Multi-ancestry research reveals shared and population-specific genetic effects in Alzheimer's, demonstrating the importance of diverse study participants.
Health & Sun ProtectionJournal of Investigative DermatologyNintedanib Shows Promise in Lab Models of Skin Fibrosis Linked to Systemic Sclerosis
Recent research explores how the drug nintedanib affects skin fibrosis in laboratory models of systemic sclerosis, offering potential insights for albinism-related skin conditions.
Health & Sun ProtectionAllAfrica — AlbinismNigeria's Fight Against Malaria: How Environmental Challenges Impact Persons with Albinism
Despite significant progress in reducing malaria prevalence, Nigeria's environmental sanitation issues create particular risks for people with albinism, who face unique challenges.
Real StoriesAlbinism Life Podcast (Albinism Fellowship UK)Finding Belonging: Jess Shares Her Journey with Albinism in School
In a moving podcast episode, A-level student Jess discusses social challenges, mental health, and her strong sense of identity as a young person with albinism.
Health & Sun ProtectionAmerican Journal of Human GeneticsNew Long-Read DNA Sequencing Shows Promise for Diagnosing Rare Conditions
HiFi sequencing technology demonstrates remarkable 99.6% accuracy in detecting difficult genetic variants, offering hope for improved albinism diagnostics.
Health & Sun ProtectionJournal of Investigative DermatologyPromising Cell-Based Therapy for Alopecia Areata: Study Shows How T Cells May Help Hair Regrowth
Researchers have identified potential of specialized immune cells in restoring hair growth in alopecia areata, opening avenues for new treatments.
Human RightsOHCHR — Independent Expert on AlbinismUN Expert Releases New Guidelines for Media Reporting on Children with Albinism
The UN Independent Expert on Albinism has published a new guiding note to promote ethical and dignified media coverage of children with albinism.
Health & Sun ProtectionAmerican Journal of Human GeneticsBalancing Scientific Progress with Privacy: The Challenges of Data Sharing in Albinism Research
How researchers are working to share valuable genomic data while protecting participants with albinism and other genetic conditions from potential harms.