We set out this year with a clear mission: to build a complete community so that anyone living with MPS, Fabry or a related condition feels there is a place for them, where they belong.
After a long gap, this year’s conference allowed us to reconnect and reflect on what our community truly needs from coming together. Our Support Team significantly expanded its community offer, now hosting 15 WhatsApp groups and a Facebook group, which allows support to be shared in a more informal, accessible and community-driven way.
We built on the learning from the 2024 Fabry Matters conference, refining our approach to better support the Fabry community. Our focus was on connection, self-advocacy and resilience. Alongside this, we worked closely with a group of Adult Ambassadors who met regularly throughout the year. They have played a vital role in representing their peers, strengthening community engagement and raising awareness of MPS and related conditions.
We delivered seven events across the year, creating opportunities for our community to come together in ways that reflect the diversity of their experiences. From families and siblings to independently living young adults and bereaved families, we have aimed to support people at every stage of their journey.
For our professional community, we hosted our first joint meeting with the International MPS Network, focusing on the role of biomarkers in improving access to treatments. This brought together experts from around the world to deepen understanding and highlight the importance of integrating biomarkers into regulatory frameworks.
With a brilliant team of employees and excellent trustees I know 2026 will be a year we can make an even bigger impact and for me in particular, change needs to happen so we can all experience a rare life lived better.
