We have spent 2023 readying ourselves for the future. We launched our strategic plan for the next three years and chose two areas to focus on: improving the newborn screening process for rare diseases and increasing mental health support for our community.
Our hard work in advocating for access to new treatments for our community resulted in a number of highly-specialised treatments being recommended for use. This included a treatment for infantile lysosomal acid lipase deficiency (LAL D), an enzyme replacement therapy for Fabry disease and life changing medication for the treatment of alpha mannosidosis.
Advocating and supporting our families will always be the cornerstone of the MPS Society and even in such a challenging financial climate our Advocacy Team have continued to support, advise and walk alongside our families, helping them to try and live the best lives they can.
Among the many other things we did in 2023, concentrating on our community and what they need led us to start the support hub which sparked a number of other community-based initiatives in 2024. It's been great to deliver something we can see as a real need in our community.
And of course none of this is possible without the fundraisers and volunteers who work so hard to make sure we are here, transforming lives for those with MPS, Fabry and related conditions.
