Join individuals and families around the world who are affected by Alpha-mannosidosis for a unique opportunity to connect, share and support one another.
This meeting is being hosted jointly by MPS Society UK, MPS Society Spain and MPS Society Germany.
Why join?
Connect globally with others affected by alpha mannosidosis
Share experiences, challenges and ideas
Learn about unmet needs and recent research updates
Explore interest in further virtual and in-person meet-ups
Build a supportive international community
Download the meeting flyer:
Agenda highlights
Welcome and introductions
Unmet clinical and support needs for people with Alpha-mannosidosis - Dr Christina Lampe
Overview of recent research findings looking into the patient & caregiver burden - Dr Mercedes Gil
How can we support you? Information gaps and community needs
Ideas for future workshops
Exploring interest in an in-person meeting
Summary and next steps
Language support
Presentations will be in English. Where possible, we’ll provide AI-powered translation and offer breakout rooms for discussions in your own language.
Acknowledgement of support
This event has been sponsored by Chiesi Farmaceutici S.p.A., who have had no input into the event content or delivery. An outcomes summary report will be shared post-event. A copy will be shared with Chiesi Farmaceutici S.p.A. as part of the sponsorship package.
Please note this meeting will be recorded for monitoring and reporting purposes.