Extracts below from announcement from Rare Diseases International, and from the Resolution. HIFA congratulates RDI on this achievement and we stand ready to collaborate to help meet the information needs of people living with rare diseases, their families, and all health professionals who are responsible for early diagnosis and appropriate referral and management. (We note the resolution was passed in the same session [13.3 Universal Health Coverage] as the official statement from HIFA.)
Read announcement online: https://www.rarediseasesinternational.org/author/debra/
Read the full Resolution here: https://apps.who.int/gb/ebwha/pdf_files/WHA78/A78_R11-en.pdf
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The Resolution on Rare Diseases was officially adopted at the 78th World Health Assembly (WHA78) on 24 May, 2025.
This is a milestone moment for the global rare disease community. The adoption of this Resolution by WHO Member States marks a powerful step forward in ensuring equity, visibility, and inclusion for the 300 million people living with a rare disease around the world.
At Rare Diseases International, we are beyond excited and proud to have contributed to this incredible achievement — a true testament to the strength of collective advocacy and international cooperation. We thank the the 41 Member States who co-sponsored the Resolution — with special acknowledgment to the leadership of Egypt and Spain, who played a key role in driving this initiative forward — and to the 275 civil society organizations who rallied behind this call. Your leadership and support have made history.
Let’s continue working together to turn this Resolution into real action at national and regional levels.
Read the WHA Coalition’s announcement on the adoption of the Resolution.
Recognizing that a rare disease is often described as a specific health condition affecting fewer than 1 in 2000 individuals in general population, and that there are currently more than 7000 known rare diseases impacting more than 300 million people globally,
Recognizing also that, in addition to the physical impact, some persons living with a rare disease, their families and carers may experience discrimination and psychosocial consequences, such as isolation, stigmatization and limited opportunities for social inclusion, which are often intensified by a lack of public awareness and knowledge and the absence, limited scope or poor implementation of policies and social support;
Recognizing from an equity perspective that women and children living with a rare disease encounter greater challenges in accessing care, including the late diagnosis, biases in symptom assessment and reduced access to timely and appropriate treatment, which significantly impact their quality of life and overall health outcomes;
Recognizing that early identification can prevent the onset of disease symptoms or delay the progression of both common and rare diseases, thereby reducing child mortality and morbidity, improving the quality of life of persons living with a rare disease and conferring significant benefits on them, their families, their carers and society as a whole;
URGES Member States,8
taking into account national context and priorities:
(1) to commit:
(a) to providing appropriate support to the WHO Secretariat for developing a comprehensive global action plan on rare diseases...
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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