A systematic review has been published in the Orphanet Journal of Rare Diseases, synthesising the current literature on preferences, attitudes and views regarding genetic newborn screening (gNBS) for rare diseases. Overall, the authors found that generally favourable attitudes towards gNBS are repor...

EURORDIS is leading a multi-stakeholder initiative to develop a European Blueprint for Rare Diseases – a detailed design for how rare disease policy can be structured, coordinated, and delivered in practice, spanning healthcare, research, and broader social systems. The Blueprint aims to tackl...

On 24 May 2025, Member States of the World Health Assembly (WHA) voted to adopt the organisation’s first-ever Resolution on Rare Diseases, marking a major step forward for the global rare disease community. The Resolution calls on the WHO to develop a Global Action Plan on rare diseases, thereby e...

A new article has been published in Rare Disease and Orphan Drugs Journal, describing the work of six different patient organisations around the globe to advocate for newborn screening (NBS) and better awareness of rare diseases. In this collaboration between the International Rare Diseases Research...

Please see this link: https://dominicantoday.com/dr/health/2024/04/09/dominican-republic-moves-to-implement-neonatal-screening/