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 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.
Health & Sun ProtectionJournal of Investigative DermatologyNew Imaging Techniques May Enable Earlier Detection of Skin Conditions in Albinism
Researchers are exploring advanced imaging methods that could detect skin changes earlier, with potential benefits for people with albinism.
Health & Sun ProtectionJournal of Investigative DermatologyPediatric Dermatology Research Alliance: Building Consensus for Children with Skin Conditions
How collaborative research through PeDRA is transforming care for children with skin conditions including albinism, with over 140 published studies since 2012.
Health & Sun ProtectionJournal of Investigative DermatologyJAK Inhibitors Show Promise for Granuloma Annulare, But May Increase Acne Risk
Research indicates JAK inhibitor treatments help granuloma annulare skin condition while potentially expanding acne-causing bacteria.
Health & Sun ProtectionJournal of Investigative DermatologyStudy Reveals Link Between Skin Disorder and Foot Odor: New Insights for Treatment
Researchers have uncovered connections between a rare genetic skin condition and foot odor, offering potential new directions for managing symptoms.
Health & Sun ProtectionJournal of Investigative DermatologyResearch Reveals Unique Biomarkers in Prurigo Nodularis Affecting People with Albinism
New study identifies distinct markers in prurigo nodularis, a skin condition that can significantly impact people with albinism who already face skin vulnerabilities.
Health & Sun ProtectionPubMed — Albinism ResearchStudy Reveals Genetic Origins of Famous Barcelona Gorilla's Albinism
New research attributes the rare albinism of Barcelona Zoo's famous white gorilla to inbreeding rather than a spontaneous mutation, offering insights for conservation.