World Health Assembly passes landmark resolution on rare diseases!

The 24th of May 2025 has now become a day to remember in the world of persons living with rare conditions and their families. Click כָּאן to read the full resolution on health equity and social inclusion of people living with rare conditions (pages 13-21). 

At the 78th World Health Assembly in Geneva, countries adopted the world’s first ever first-ever WHO resolution recognizing rare diseases and neglected skin diseases as global equity issues. FraXI’s president Dr Kirsten Johnson was present among many other dignitaries and experts working in the field of promoting health and social equity for those living with rare conditions worldwides. 

The resolution recognises that there are currently 300 million people across the world living with one of more than 7000 known rare conditions, 70% of them starting to show signs of their condition during childhood. The following important factors were also acknowledged: 

• That rare conditions are often complex and multisystemic, affecting multiple organs and leading to comorbidities, and that many of these conditions are chronic and progressive
• That some persons living with a rare disease have disabilities, which may have a greater impact on their health, and that they may also face various barriers, which may hinder their full and effective participation in society on an equal basis with others
• That families and carers of persons living with rare conditions may experience discrimination and psychosocial consequences, such as isolation, stigmatization and limited opportunities for social inclusion
• That persons living with a rare disease (including those whose disease is undiagnosed), their families and carers may be psychologically, socially and economically vulnerable throughout their life course, facing specific challenges in several areas, including but not limited to physical and mental health, education, employment, financial well-being and leisure
• That a a holistic patient-centred approach to address the needs of persons living with a rare disease is needed in diagnosing rare conditions
• That women and children are exposed to greater vulnerabilities and challenges due to existing inequalities 

The importance of the resolution for the Fragile X Community

Our Fragile X family is small, but is accomplishing big things! Your participation, interest and selflessness in sharing your journeys living with Fragile X Syndrome are part of the reason why the WHA has taken this big step forward in guaranteeing that no one living with a rare condition is left behind. The resolution is a call to action for policy-makers, governmental health and research authorities, academic institutions, clinicians, patient organizations, the private sector and civil societies in order to foster innovation in research and innovative diagnosis and interventions. 

The Fragile X community has always pushed for a holistic, person-centred approach to diagnosis and early interventions. This means that it is the person living with Fragile X Syndrome and not the features of the condition itself that is given prominence. 

With the passing of the resolution, member states will be committed to improving healthcare conditions for those living with a rare disease through an integrated approach, ensuring equitable access to timely, cost-effective and affordable, available, accurate diagnosis, particularly for newborns through universal screening programmes. This commitment also encompasses achieving full social inclusion for the community, eradicating discrimination and stigmatisation of people living with Fragile X Syndrome (with visible and invisible disabilities) at all levels of society.