This first international alpha-mannosidosis community meeting was created to bring people together and strengthen connections across countries. Our aims were to:
Create a shared space for families, individuals living with alpha-mannosidosis, and clinicians to meet and learn from one another.
Share helpful updates on medical care, research progress, and new resources being developed to support the community.
Talk openly about the challenges families face and identify what support is most needed going forward.
Explore the best ways to stay connected, including regular online gatherings and the possibility of future in person meetings.
Our goal was to make the information easy to understand, reduce technical language, and ensure everyone, regardless of background, could take part fully.
This publication is available in three languages.
We gratefully acknowledge the financial support provided by Chiesi Global Rare Diseases through an independent educational grant. The sponsor had no role in the planning, content development, or execution of this meeting. A high-level summary of the key outcomes will be provided to them post-event for transparency.
