Our patient services team has had another eventful month, working tirelessly across the UK to support families, provide education for professionals and advocate for our community at every level.
Education in Northern Ireland & support in Scotland
Alison has been travelling throughout Northern Ireland, delivering education sessions for community paediatricians in partnership with the Northern Ireland Paediatric Metabolic Team. So far, session have been held and exceptionally well attended in:
Antrim Area Hospital
Belfast Trust
Craigavon Hospital
Altnagelvin Hospital
Daisy Hill Hospital
These sessions have focused on lysosomal storage disorders with one key aim - to raise awareness of early signs and thus ensure referral pathways are clearly understood, helping to reduce time to diagnosis.
In Scotland, Alison spent four days visiting families in their homes and hosting a meet-and-greet in Glasgow, giving local families the chance to connect with each other and the MPS Society.
Strengthening regional networks is vital because no one should feel isolated when living with a rare condition.
Gaucher Association conference 2025
Hannah attended the Gaucher Association Conference this month, where she spoke about self-advocacy and independent living. It was a fantastic opportunity to strengthen ties and raise awareness of how our support services can benefit the Gaucher community.
Advocacy for airway care
Sophie continues to lead and bring the patient voice to clinical discussions around airway care for individuals with MPS conditions. Ensuring services are shaped by lived experience is critical to improving outcomes.
National representation
Bob represented the MPS Society at two major events this month:
NHS ConfedExpo in Manchester
BIMDG (British Inherited Metabolic Disease Group) meeting in Edinburgh
Both events were key opportunities to amplify the needs of our community and to build relationships with healthcare professionals and decision-makers.
