Join us for an information evening where you can learn more about the opportunities on how to get involved and meaningfully engage with us to influence the direction of the services we provide.
Our members are at the centre of everything we do and we want to ensure that everything we do aligns with your needs. We do this by listening to our members, seeking feedback about existing services:
Rare Voices
This is a member engagement forum hosted by the Support and Advocacy Team. Our aim is for Rare Voices to include a representative group of affected adults, parents, carers, siblings and bereaved members with the purpose of giving feedback, making suggestions and influencing how we provide services to our membership.
Ambassador Programme
The Support and Advocacy Team will be working with a group of Adult Ambassadors throughout 2025. They will play a vital role in representing their peers, fostering community engagement, and raising awareness of MPS and related conditions.