We have noted on HIFA the special importance of information on rare diseases. Collectively they form a substantial burden of morbidity and mortality. Because they are rare, they are often unfamiliar and diagnosed late, if at all. Health workers, patients and families have difficulty to find relevant, reliable information. This letter highlights some of the issues:
Digital solutions for rare diseases in global health
Ayla Gerk et al.
Lancet Global Health; CORRESPONDENCE| VOLUME 12, ISSUE 7, E1091, JULY 2024
Open Access Published:May 24, 2024DOI:https://doi.org/10.1016/S2214-109X(24)00189-X
'In LMICs access to essential resources, information, and care remains severely restricted, exacerbating the unexplored burden of patients with rare diseases and their families. The goal of equipping all primary health centres with the infrastructure and training needed to manage most rare diseases might not be feasible, particularly in LMICs. Nonetheless, exploring alternatives that ensure the fundamental requirements for accurate diagnosis and timely referral is essential. It is equally important to offer accessible and evidence-based information on the necessary steps following a diagnosis for families and health-care providers...'
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
