LISBON - A UN expert today called for greater clarity and robust system-wide action to integrate persons with albinism and ensure their ease of access to services, including education, health and employment in Portugal.
"While I noted several positive initiatives by Portugal, there is a need for coordinated measures across the machinery of government to ensure better understanding of albinism and uniformity in the provision of support services to adequately respond to the needs of persons with albinism," said Muluka-Anne Miti-Drummond, the Independent Expert on the enjoyment of human rights by persons with albinism.
"While no albinism-specific provision exists in the legal and policy framework, the legislative architecture on disability rights is sufficiently broad to protect the human rights of persons with albinism taking into consideration their unique condition," Miti-Drummond said.
The expert said she had concerns about implementation and effectiveness of the existing architecture, especially as key elements seem not harmonised or standardised to ensure that no one is left behind in the quest for a just and equal society for persons with albinism.
Miti-Drummond noted that despite progress since the adoption of Law 54 on inclusive education - including the new Law No. 10 of 2024 on mobility support for students with low vision - implementation remains uneven. She stressed the need for consistent, standardised practices nationwide, warning that limited resources and oversight gaps are hindering full and effective application of the law.
"I am also concerned over the absence of disaggregated data on albinism across health, education, employment, immigration and other sectors, which impede efforts to determine the prevalence of albinism in Portugal, area distribution of persons with albinism and the specific challenges they face in their daily lives, including access to services."
Miti-Drummond said authorities attributed this to the requirement for strict compliance to data protection and privacy policies but urged them put in place modalities for appropriate data collection within the realm of privacy laws.
"Data on albinism would be essential in evidence-based policy decisions that address specific needs and inequalities, and for monitoring progress of human rights implementation and development goals."
The Independent Expert will present a detailed report on her visit to the UN Human Rights Council in March 2027.
