Our community is at the heart of everything we do. Making your voices heard is a key priority for us, and this month has been no exception. Read on to find out which meetings and conferences we attended to represent you.
ABPI patient engagement group meeting
The ABPI is the Association of the British Pharmaceutical Industry. This engagement group meeting focussed on understanding the VPAG agreement (Voluntary Pricing Agreement) between pharma and the government. The agreement keeps the NHS spend on medicines below a certain level. Recent adjustments have meant a change in formula, meaning that the pharmaceutical industry would be paying additional tax. Being part of this conversation is critical for the MPS Society, having Bob’s voice at the table ensures that patient voices are not forgotten in this process.
ABPI conference
Bob and Bennie from RDRP joined this informative event with over 400 people in attendance. MPS Society and RDRP shared a stand with lots of people dropping in to say hello and discuss future collaborative working. Events like this are hugely important to raise the profile of both RDRP and the MPS Society.
England Rare Disease Patient Advisory Group
Patient groups led by Genetic Alliance met to review progress on previous work streams and look at the new work streams for 2025. In brief these are:
Co-ordinated clinics so that patients see multiple professionals on the one visit
Better access to clinical trials and treatment
Individualised medicine (especially for small population groups)
Childhood dementia Action Group Meeting
This is a new group set up by Alzheimer's Scotland to raise awareness and drive change in Scotland in recognising conditions that cause childhood dementia. We are really looking forward to seeing developments from this group and how it changes the landscape for childhood dementia. Sophie is contributing to this group ensuring our members' voices are heard.
Global LSD collaborative meeting
This collaborative continues to develop and funding requests have been submitted to support its growth. Having a global voice is essential when dealing with rare diseases – together we are many!
Fabry International Network Meeting
Fabry Awareness Month ends in Lisbon with Bob, Alison and representatives from RDRP traveling to attend and contribute to the Fabry International Network meeting. We will be sharing a full report from this event next month.
