The Global LSD Collaborative: A New Era of Advocacy Begins at WORLD 2024
The Global LSD Collaborative officially launched at the WORLD Symposium 2024, marking an exciting milestone for the lysosomal storage disease (LSD) community. This first-ever meeting will serve as an introduction to the Collaborative, bringing together patient advocacy groups from around the world to discuss the importance of working together to drive meaningful change.
Why the Global LSD Collaborative?
The LSD community is vast, spanning multiple diseases, regions, and healthcare systems. Advocacy groups have long worked tirelessly to support patients and families, but too often, these efforts happen in silos. By joining forces, we can amplify our collective voice, share best practices, and work towards common goals—whether that’s improving standards of care, increasing access to treatments, or advocating for better policies.
The Global LSD Collaborative was created to foster true collaboration across patient organizations, ensuring that every group has a platform to contribute and benefit from shared knowledge and resources.
What to Expect from the Introductory Meeting
This inaugural meeting at WORLD 2024 is a starting point—an opportunity to connect, discuss key priorities, and lay the groundwork for how we will work together moving forward. Topics on the agenda include:
- The mission and vision of the Collaborative
- How we can share expertise and resources
- The role of advocacy groups in driving change for the LSD community
- Next steps to ensure this collaboration leads to real impact
This is just the beginning. The Global LSD Collaborative is designed to evolve, shaped by the needs and insights of the advocacy groups involved.
Join the Conversation
If you’re attending WORLD Symposium 2025 and want to learn more about the Global LSD Collaborative, we encourage you to join us for this introductory session. This is a chance to be part of something bigger—to help build a global network that strengthens our advocacy efforts and improves the lives of those affected by lysosomal storage diseases.
We look forward to seeing you there and starting this journey together!
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