It's been another busy month in which the MPS Society team actively represented you and educated professionals across the UK. Read this snapshot of what we’ve been up to.
MLD Conference
Sophie and Steve travelled to Telford to attend the MLD Conference hosted by the MLD Support Association UK. Sophie presented on the role of the LSD Collaborative, while Steve spoke about the MPS Society’s commitment to providing support and advocacy for the MLD community. Our relationship with the MLD Support Association remains invaluable, and we look forward to continued collaboration to strengthen support for individuals affected by MLD.
International MPS Meeting
Bob attended the International MPS (IMPS) meeting in Amsterdam, a vital event for strengthening global collaboration. This meeting provided an opportunity to unite international efforts in supporting the MPS community and sharing best practices worldwide.
Living Well Conference
Steve attended the Living Well Conference, hosted by Metabolic Support UK and Beacon for Rare Diseases. The conference explored what it truly means to live well with a rare disease, emphasising the role of the Equality Act (2010) in ensuring individuals receive the support they need today. Networking with other rare disease organisations is crucial in working towards the shared goal of improving the lives of those in our communities.
Family Screening Project
Alison was invited to contribute to a research project focused on the communication of genetic risk. Alongside Dr. Fiona Stewart she discussed the crucial role of family screening in ensuring individuals with Fabry Disease receive an early diagnosis. By bringing community insights into research discussions, we help shape projects and service developments that align with the needs of our members. We look forward to continuing to support this initiative and ensuring services are tailored to meet the needs of the Fabry community.
LINK Meeting
Alison continued her genetics education efforts at the LINK meeting, engaging with nurses and allied health professionals. She highlighted the essential role that the entire medical team plays in supporting families as they communicate genetic risks. These discussions are vital in enhancing the care and support available to those affected by rare genetic conditions.
Looking ahead...
NICE Conference
Alison will attend the NICE Conference, staying informed on the evolving NHS landscape. Understanding these changes is key to our advocacy efforts, ensuring we can effectively represent the needs of the MPS and Fabry communities. As part of the NICE Voluntary and Community Sector Forum, the MPS Society ensures that your voice is heard when NICE determines its priorities.
Engaging with key stakeholders, collaborating with researchers and advocating for our communities remain at the heart of what we do. We will continue to represent and support you in every possible way, ensuring that progress is made for individuals living with MPS, Fabry and related conditions.
