We recognise that when it comes to supporting our members, we can do so much more through collaboration. Each month your MPS Society Team represent you on a variety of different forums both nationally and internationally. Here’s what we’ve been up to in October.
Bob
Fabry International Network (FIN) meeting: Bob sits on the FIN board, ensuring that our UK Fabry members are represented internationally. FIN are currently planning for their 2026 meeting in Lisbon and we will keep you up to date with how things are going.
International MPS and Related Diseases Network (IMPSN) board meeting: Bob is also an IMPSN Board member and attended their most recent strategy meeting. IMPSN was founded by our very own Christine Lavery and is a global community of informed and empowered organisations which aims to promote access to medicines, new research, and programs that lead to better quality of lives for patients and those affected by these conditions.
Aspire Biosciences meeting: At this meeting, Bob highlighted the advantages of partnering with RDRP in the development and delivery of clinical trials. RDRP put patients first and ensure that the experience for patients second to none.
Patient Advisory Group (PAG) meeting: Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. We have been a Genetic Alliance member organisation for many years. During this meeting, Bob heard updates on the priorities of Genetics Alliance UK, Newborn Screening (NBS) is a particular area of focus.
Sophie
NICE Voluntary and Community Sector (VCS) forum meeting: Sophie and Alison attended the NICE VSC forum meeting where NICE presented their new stakeholder engagement strategy and talked to attendees about how they can engage with them more meaningfully. There was also a focus on addressing health inequalities – a topic relevant to rare disease - and the prioritisation of work within NICE. This is an important forum to ensure that our relationship with NICE is productive and that we are given opportunities to feed into their work.
NICE Highly Specialised Technologies (HST) meeting: NICE are reviewing HST guidance to ensure the criteria is clear and understandable. They are not looking to change the criteria approved in 2021/2022 but want to clarify the criteria and ensure language used is appropriate, clear and understandable. By doing this they hope to minimise ambiguity, subjectivity and variability. Consultation is due to open December 2024. Watch a webinar on this topic.
MLD NBS steering group: A steering group of clinicians, scientists, and patient organisations was formalised in 2023 following confirmation that the UK NSC felt there was sufficient evidence to justify a more in-depth review of the evidence. The group meets regularly to review and gather evidence to meet the NCS requirements and hopes to be able to apply for a rapid review before the next review cycle which is in 2026. The group also collaborates closely with industry and and experts across the globe to add to the growing evidence for the UK.
LSD collaborative: Established in 2009, its core aim was to form an action group to advocate and work on behalf of LSD patients and their families in the UK. In 2022, formalisation of the collaborative was complete to facilitate and support shared working and initiatives across the organisations. The LSD Collaborative includes 7 core members (MPS Society is one) and 3 associate members. Priority areas include: patient professional partnership network, NBS Collaborative, patient experience , mental health, rare disease policy, access to therapy and the newly formed LSD global.
MPS airways meeting: Hosted by the MPS Society, 25 professionals representing 6 countries attended the first virtual meeting in November 2023 to discuss complex airways with a focus on MPS II and MPSIVA. Following this, a working group was convened to attend a face to face in Wuerzburg to take forward agreed actions. 24 professionals representing 6 countries attended (16 in person & 8 virtually). Agreed plan and next steps include: development of international consensus guidelines for MPS II & MPSIVA, development of an emergency airway management plan for patients.
Steve
Council for Disabled Children (CDC): Steve recently attended a meeting hosted by the Council for Disabled Children (CDC) which was primarily focussed on special educational needs and disabilities (SEND). The CDC is an umbrella body for the disabled children's sector. It has a membership of over 300 voluntary and community organisations and an active network of practitioners that spans education, health and social care. We are now a member of the CDC; it is so important to us that your voices are heard.
Community Care Live Conference: Steve attended sessions focusing on best interest, the Mental Capacity Act and decision making – all hugely important topics for our membership. A key focus at the conference was ‘Solution focused practice’ which concentrates on helping people move towards the future that they want and to learn what can be done differently by using their existing skills, strategies and ideas, rather than focusing on the problem. We look forward to passing on our learnings to our community.
