This week’s blog is written by our Digital Resources Manager, Blayne.
Read a summary of what the World Health Assembly (WHA) Resolution on Rare Diseases calls for, and when it could be sanctioned by the World Health Organization (WHO)!
Rare diseases are one step closer to being seen (and acknowledged) as a global health priority.
Rare Diseases International’s World Health Assembly (WHA) Resolution on Rare Diseases was officially recommended for adoption at the 78th WHA by the 156th World Health Organization (WHO) Executive Board in February 2025.
Did you know? The WHA is the decision-making body of the World Health Organization (WHO)
After this first milestone was reached, the World Health Assembly (WHA) Resolution on Rare Diseases and accompanying Global Action Plan (GAP) will now seek to be sanctioned at the 78th World Health Assembly in Geneva, Switzerland, on the 19-27 of May 2025!
Beacon is proud to be one of over 200 Coalition members who support the #Resolution4Rare alongside 26 Member State co-sponsors.
The #Resolution4Rare campaign was initiated and led by the Arab Republic of Egypt and Spain to enhance visibility, equity and agency for those living with a rare condition around the world.
The official recommendation of the World Health Assembly (WHA) Resolution on Rare Diseases comes after the UN General Assembly unanimously adopted the UN Resolution Addressing the Challenges of Persons Living with a Rare Disease and their Families in December 2021.
The 2021 UN Resolution catapulted rare diseases onto the agenda and priority of the UN, but getting rare diseases onto the global health stage as a priority would take a WHA Resolution.
What’s the difference between the 2021 UN Resolution and the WHA Resolution?
There are three major differences between the 2021 UN Resolution and the WHA Resolution.
– The WHA Resolution focuses specifically on health, whereas the UN Resolution addresses all challenges faced by those living with a rare disease.
– The WHA Resolution also sets clear targets and deadlines, whereas the UN Resolution outlines overarching principles.
– Lastly, the WHA Resolution would be implemented by Ministries of Health, whereas the UN Resolution would be implemented by multiple ministries, such as health, social services, etc.)
What does the WHA Resolution on Rare Diseases call for?
The WHA Resolution on Rare Diseases seeks to address the global challenges faced by those living with a rare disease, such as:
- Delay in accessing a diagnosis
- Appropriate care and support
- Limited treatment and research into new therapies
- Financial and social burdens
By adopting a health-specific global framework, the WHA Resolution on Rare Diseases will work to:
- Increase awareness
- Improve the time to diagnosis
- Increase access to care and treatment
- Foster research and development into new therapies
Aim of the WHA Resolution on Rare Diseases
The WHA Resolution on Rare Diseases aims to place an international focus on rare diseases, solidifying them as an international priority on the global health agenda.
The #Resolution4Rare acknowledges that rare diseases are still an unmet need in healthcare, which is why a global effort is needed to improve the rare disease ecosystem and maximise impact.
The WHA Resolution aims to do the following to ensure this:
- Better integrate rare diseases into primary healthcare and child health
- Mobilise support for investment
- Pool global resources and expertise
The #Resolution4Rare doesn’t stop there, either!
The intention is to task the World Health Organization (WHO) with developing a Global Action Plan (GAP) that includes:
- Global targets
- Strategic goals
- Specific actions and steps needed to achieve them
The goal of the GAP is to be the common reference point for identifying rare diseases and the catalyst that spurs collective action to make rare diseases a priority on the global health agenda.
The GAP will enforce accountability, make Universal Health Coverage (UHC) closer to becoming a reality, promote health equity and encourage the world to meet the Global Health 2035 goals.
Beacon strongly supports the #Resolution4Rare and the call for WHO to develop a Global Action Plan for rare diseases.
Like Rare Diseases International said, “Rare diseases impact us all—family, friends, neighbours.
Together, we can drive change and create a future where people with rare diseases receive the care and recognition they need and deserve.”
If you’d like to learn more about the WHA Resolution for Rare Diseases, head to Rare Diseases International’s website where you can watch webinars, get involved on social media with customisable frames and posts, and join the coalition on the WHA Resolution on Rare Diseases to show your support.
Thank you for reading this blog.
We hope this summary helped explain what the WHA Resolution means for the rare disease community and why it matters
