RESEARCH
Since our inception, we have launched a range of initiatives to advance research in the field. Much of this work has focused on biomedical aspects, helping to build a stronger understanding of the health challenges faced by persons with albinism.
SKIN CANCER RESEARCH
Research on skin cancer in persons with albinism remains limited, and reliable data on its prevalence and impact are scarce. This evidence gap hampers advocacy and the development of effective policies and programs.
To address this, the Global Albinism Alliance has launched initiatives to promote research and strengthen knowledge in this area. A key milestone was achieved in 2023 through a collaboration with the International Agency for Research on Cancer (IARC), the WHO’s specialized cancer agency, to advance international research and ensure PWA are included in the global fight against cancer.
ALBINISM VARIANT CURATION EXPERT PANEL
The Albinism Variant Curation Expert Panel (VCEP) was established in 2023 through the initiative of the Global Albinism Alliance and leading international experts in albinism. Its mission is to develop standardized criteria for classifying genetic variants in genes linked to ocular and oculocutaneous albinism.
The panel is coordinated by Antoine Gliksohn, GAA Executive Director, co-chaired by Dr. David Adams (NIH, USA) and Dr. Panagiotis Sergouniotis (UK). The VCEP will initially focus on the Tyrosinase (OCA1) and OCA2 genes, with plans to curate all remaining albinism genes, including TYRP1, SLC45A2, SLC24A5, LRMDA, DCT, and GPR143 (OCA3-8 and OA1).
The ultimate goal of this long-term project is to create a globally accessible resource providing the highest-quality diagnostic information for persons with albinism and their families.
INTERNATIONAL SCIENTIFIC CONFERENCE ON ALBINISM
The International Scientific Conference on Albinism (ISCA) was launched by the Global Albinism Alliance (GAA) in 2022 and has quickly become the cornerstone of GAA’s work to advance knowledge about albinism.
ISCA serves as the global meeting point for scientists and healthcare providers focused on the biomedical aspects of albinism. It provides a unique platform for sharing research, exchanging expertise, and discussing solutions to improve the health and wellbeing of persons with albinism worldwide.
The inaugural ISCA conference was held online in November 2022, building on the legacy of the European Days of Albinism (EDA) conference series. From 2012 to 2020, EDA conferences were co-organized biennially by Albinism Europe and different national albinism associations across Europe.
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