We are excited to offer two exciting, new opportunities for members to actively engage in shaping our work. These are the Rare Voices Group and the MPS Ambassador Programme. If you want to make a difference in 2025, read on to find out how you can get involved!
Ways to get involved in 2025
To ensure our work continues to reflect the needs of the community, we are inviting members to join one, or both of our two engagement opportunities:
1. Rare Voices Engagement Group
A platform for individuals and families affected by MPS, Fabry, and related conditions to voice concerns, share lived experiences, and help influence research, advocacy, and policy
Meetings focus on key issues like healthcare access, mental health support, and medical research
Open to all members who want to have a say in shaping future support and services
2. MPS Society Ambassador Programme
Designed for adults (18+ years and UK-based) who are affected by one of the 27 conditions supported by the MPS Society
Ambassadors play a key role in representing their peers, advocating for adult services, and helping to create stronger connections within the MPS community
Responsibilities include peer support, community engagement, and sharing lived experiences at events and online
This is a fantastic opportunity to help shape the future of the MPS Society while connecting with others in a meaningful way.
If you’d like to be involved in Rare Voices or become an MPS Ambassador, we’d love to hear from you!
Let’s work together to build a stronger, more connected community for all those affected by MPS and related conditions.
Your voice matters!
Key insights from the Rare Voices Group
The MPS Society’s Rare Voices Group has been a powerful platform for discussion, advocacy, and change within our community. The 2024 meetings identified key priorities, including better communication on available support, increased research involvement, and improved care coordination. This year’s discussions focused on the following critical areas:
Support & Advocacy
Many members are unaware of the full scope of our services. We’re working on improving communication and expanding support, particularly for Fabry-specific advocacy.
Research and medical developments
There is strong interest in patient-led research and clearer pathways for community involvement in research and guideline development. Discussions also covered AI applications in symptom tracking and newborn screening.
Community and events
Members called for more interactive workshops at conferences, along with hybrid event options to ensure accessibility. A peer support and buddy system was also widely supported.
Young people and digital engagement
Calls were made for face-to-face events for young adults, better employment guidance, and increased engagement on social media.
Care coordination and transition to adult services
Concerns were raised about poor communication between specialist and local healthcare services, as well as challenges in transitioning from paediatric to adult care.
Mental health and emotional support
Members emphasised that mental health should be integrated into core care services and not treated as an optional extra.
Home care and infusion safety
Concerns about home infusion safety led to calls for better patient education and training on infusion protocols.
These insights are shaping our next steps, including developing an ambassador and peer support system and strengthening our engagement with policymakers.
