Exciting news for health advocates, professionals, and patients alike—especially our Australian community! Mark your calendars for 29 May, 6–9pm CET for the 78th World Health Assembly (WHA). This event isn’t just another date on the calendar—it marks a historic turning point for rare disease patients globally.
Note for our Australian audience (AEDT): The event is scheduled in Central European Time (CET). For those in Australia, please be aware that 6–9pm CET translates to 3–6am AEDT on 30 May. We encourage you to plan ahead or check if a recording will be available so you don’t miss out on this transformative discussion.
A Historic Breakthrough for Rare Diseases
At the heart of this historic moment is #Resolution4Rare. Officially recommended for adoption at the 78th WHA by the 156th WHO Executive Board, this resolution is a milestone for the global rare disease community. It sends a resounding message that the time for change is now—one that promises to:
Accelerate Research and Innovation: By prioritising rare diseases, the resolution aims to unlock new avenues for scientific breakthroughs and better treatments.
Enhance Treatment Access: It strives to ensure that life-changing therapies become more affordable and available for all patients, no matter where they live.
Integrate Rare Diseases into Universal Health Coverage (UHC): A key call to action is to embed rare disease priorities into UHC frameworks, ensuring that every patient receives timely diagnosis and comprehensive care.
This is more than policy—it’s a rallying cry that acknowledges the urgent need for a coordinated, global response to the challenges faced by those living with rare diseases, such as Niemann-Pick disease.
What is the World Health Assembly (WHA)?
The WHA is the supreme decision-making body of the World Health Organisation (WHO), where representatives from 194 member states gather in Geneva each year to deliberate on pressing health issues and set policies that guide global health. The outcomes of these discussions directly influence international health frameworks and shape national policies, including those in Australia.
What is a WHA resolution?
WHA resolutions aren’t just formal decisions—they are powerful catalysts for change. Here’s what they do:
Set Global Health Priorities: They lay out international frameworks to tackle health challenges head-on.
Drive Innovation and Research: By prioritising critical issues, these resolutions pave the way for medical breakthroughs.
Shape National Health Policies: Countries, including Australia, integrate these directives into their domestic strategies, ensuring that global commitments translate into local action.
Insights from the Rare Diseases International Report
The recent report presented at the 156th WHO Executive Board meeting reinforces the significance of #Resolution4Rare. It calls for:
Integration into UHC: Ensuring that rare disease patients benefit from a health system that provides timely diagnoses and access to essential treatments.
Global Collaboration: Encouraging international cooperation among governments, health organisations, and patient advocacy groups to share best practices and pool resources.
Sustainable Investment in Research: Highlighting the necessity of long-term investment in rare disease research to drive innovation and improve patient outcomes.
These insights add tremendous weight to the resolution’s objectives, marking it as a pivotal step toward transforming healthcare for rare disease communities worldwide.
Why the 78th WHA Matters
This year’s WHA is more than a gathering—it’s a dynamic platform for discussion, innovation, and transformation. Here’s why you should be excited:
A Turning Point in Global Health Policy By championing #Resolution4Rare, the WHA is setting a new global standard for addressing rare diseases. This resolution is not only a policy document but a commitment to ensure that rare disease patients finally receive the attention and care they deserve.
Impact on Australia’s Health Landscape Australia’s participation in the WHA means that the groundbreaking decisions taken here will influence local health initiatives. Whether through funding priorities or innovative treatment programs, the ripple effects of this historic resolution will be felt in our national health system.
A Beacon of Hope for Rare Disease Communities For individuals diagnosed with rare conditions like Niemann-Pick disease, the adoption of #Resolution4Rare is a clarion call for change. It promises improved research, better treatment access, and comprehensive care strategies that are long overdue.
What to Expect
Expert Panels & Keynote Speeches: Listen to global leaders and experts as they discuss the development and impact of WHA resolutions.
Interactive Discussions: Engage directly with speakers, ask questions, and share your perspective on how these global decisions can benefit local communities.
Networking Opportunities: Connect with like-minded advocates, professionals, and policymakers who are passionate about transforming healthcare.
Get Involved!
This event is your chance to be part of a historic moment in global health. Whether you’re a healthcare professional, a policy enthusiast, or someone directly affected by rare diseases, your voice is essential. Join us in supporting #Resolution4Rare—a resolution that stands as a beacon of hope and a commitment to change.
Save the Date: 29 May, 6–9pm CET.
For our Australian friends (AEDT), remember that this corresponds to 3–6am AEDT on 30 May. For more details and to register, check out the event update.
Together, let’s help shape a healthier future—one resolution, one policy, one life at a time. Join us at the 78th World Health Assembly and be the change you wish to see!
How You Can Help in 2025
As we enter a new year, there are many ways you can continue to support our cause:
Together, we can create a brighter future for all those impacted by Niemann-Pick Disease in Australia and around the world.