Following the success of our Fabry Matters Conference, we are happy to bring you MPS Matters, a conference for people with MPS and related lysosomal storage diseases. This community weekend aims to provide useful information for living well with an MPS condition and a chance to meet up with others and share common experiences.
Agenda
Friday
11:00 Expert meeting (professionals only)
15:00 Arrival and registration
18:00 Buffet dinner
19:00 Welcome talks from Bob, Judith and the support team
Saturday
PARENT AND CARER COMMUNITY
09:10 Beginning of a rare life (walkthrough of LSD service)
09:30 The importance of clinical guidelines
09:50 Treatment updates
10:10 Research: where are we now?
10:30 Q&A for session 1
ADULT COMMUNITY
09:10 Launch of service
09:30 Adult care and how to navigate it
09:50 Ownership and making health decisions
10:10 Clinical Q&A: questions to panel via Whova
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10:50 Break
11:20 Breakout sessions:
Tracheal update
Gene therapy: insights so far
Self-infusion
Understanding palliative care
Time with advocacy team (for adults)
12:30 Lunch
PARENT AND CARER COMMUNITY
13:30 Principles of access to education
13:50 Occupational Therapy
14:10 Mental Capacity and Decision Making
14:20 Q&A panel
ADULT COMMUNITY
13:30 Self-advocacy and independence
13:50 Employment and Disability
14:20 Panel - experiences and opportunities
PROFESSIONAL COMMUNITY
13:30 Simulation training
14:00 Palliative care
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14:30 Selection of workshops TBC
16:00 Dragon’s Den
17:10 Poster session and drinks reception
18:30 Buffet dinner
19:30 Evening entertainment
Sunday
PARENT AND CARER COMMUNITY
09:20 Talking Transition - why it's important
09:40 Sensory session with occupational therapist
10:00 RareMinds - Support to parents/carers
10:20 Self Care - Mindfulness
10:40 Q&A for session
ADULT COMMUNITY
09:20 Rare Minds - Relationships
09:40 Discussion time
10:00 Mental Health and Identity
10:20 Discussion time
10:40 Q&A for session
PROFESSIONAL COMMUNITY
09:20 Feedback on MARS data findings
10:00 Case study discussion
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11:00 Break
11:20 Selection of workshops TBC
12:30 Closing remarks
12:50 Take away lunch and departure
The MPS Society reserves the right to alter the programme at any time.
Good to know
Early bird prices
A reduced rate (shown in the booking form) is available to UK members until 3 February 2025.
Easy payment
We have payment plans available for UK members. Please contact our events team if you would like to find out more about structured payments.
Photographic consent
During the weekend we will take photographs and videos which may be used in our publications and on our website and social media channels. If you do not want any images of you or someone in your party to be taken at the event, you must let a member of the MPS Society team know.
FAQs
Can bereaved members attend?
Yes, we plan to have a programme for members of the MPS community who have lost a loved one.
Can Fabry community attend?
Whilst the event is open to everyone, we do not have a specific Fabry programme at this conference as we held the Fabry Matters conference in 2024. We feel there will not be enough to offer the Fabry community at this event but if you would like to attend anyway, then please feel free to book.
Is there a children and young people’s programme?
We hope to offer an in-house childcare programme for all affected children, young adults and siblings under 18 years old who are not attending the conference programme (open to those aged 15 years and over).
This programme will also accommodate young adults over the age of 18 years who are unable to benefit from the conference due to their neurological or high-care needs. Young adults over the age of 18 years who wish to be included in the childcare programme may do so by prior agreement with us.
Once we receive your booking, a member of the advocacy support team will be in touch to explore your child, children’s or young person’s needs, which could include you bringing an additional adult to help care for them.
We appreciate that for some families providing a carer will not be possible or some may need additional help. We will be providing a restricted number of volunteers to provide additional support during the weekend.
All our volunteers are registered with us and we undertake a number of checks such as seeking references and obtaining an enhanced DBS check. Volunteers receive specific training on moving and handling, advice on safeguarding children and vulnerable adults and volunteer conduct.
Do I need to bring a carer?
A small team of volunteers will be available to support those attending the childcare programme, with their basic needs, and to ensure health and safety. We recognise that some families may wish to bring an additional carer who has the relevant skills and experience to support their child/family member.
Rooms in the Hilton are limited, and we will prioritise allocation of those rooms for:
MPS Society members
One additional carer
Those directly involved in delivery of our conference programme.
Whilst we will do our best to accommodate any additional carers on site, this may not be possible and additional carers may need to be accommodated off-site. Additional carers may incur an additional cost.
Wherever possible parents/families are required to play an active role in the caring responsibilities for their child/family member throughout the weekend. Please contact us to discuss your specific requirements.