Public knowledge and understanding of rare diseases is key to reducing stigma.
Erasing stigma around rare diseases
David A Pearce, Gareth Baynam
CORRESPONDENCE| VOLUME 12, ISSUE 7, E1092, JULY 2024Download Full Issue
Open AccessPublished:May 29, 2024DOI: https://doi.org/10.1016/S2214-109X(24)00219-5
'One key issue is the stigma attached to rare disease that generates inequality, marginalisation, discrimination, and exclusion in almost every country in the world, impairing access to, and benefit from, advances in diagnostics and therapeutics, as well as health, social, and community participation and services. This exclusion can prevent the start of, or continuing progress through, otherwise available and effective rare-disease diagnostic, therapeutic, and care journeys...
'Rare disease stigma is an international public health issue. Standards for implementing culturally safe and responsive mechanisms for diagnosis, care, and social inclusion are needed, particularly in low-income and middle-income countries where few studies have examined the impact of stigma on people living with a rare disease. To this end, the US National Institutes of Health developed the Stigma and Discrimination Research Toolkit to aid in addressing stigma globally, offering a framework that can be tailored to the needs of people living with a rare disease. We can erase the stigma around rare diseases, but doing so will take all of us working together.'
HIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org
