Our support events have all been postponed or replaced with virtual events.


See below for more information.

Expert meetings

Focus on ultra-rare diseases: expert meeting

2 October 2020

This expert meeting brought together knowledge from across the lysosomal storage disease and other rare disease community to share information and understanding, to find out where the gaps in knowledge are and to find out how we can fill these gaps. Open to experts only.

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MPS III Expert and Patient Meeting

New date to be announced

Aimed at providing information and education for the Sanfilippo community, this meeting will also allow families affected by Sanfilippo to attend workshops, hear first-hand experiences from other patients, carers and family members, and to meet others living with MPS III.