Our friends

LSD Collaborative 

Since inception, the MPS Society has become a world-leading patient organisation within rare diseases and we have actively encouraged and supported collaborative initiatives and partnership working. We played a leading role in establishing the UK Lysosomal Storage Diseases Patient Organisation Collaborative, a patient organisation representing those affected by lysosomal storage diseases, including MPS diseases. 

The group is made up of representatives from seven other organisations:

Useful links

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Contact us

 

If you have any other questions or would like to speak with someone about supporting the MPS Society please call 0345 389 9901 or

MPS Europe

In addition, we are a founding member of MPS Europe and the International MPS Network, working to share best practice, improve access to world-class information and trials and fundamentally, building a global community of support.

We work in partnership with a number of pharmaceutical companies on clinical trials, facilitating patient access to clinical trials through Rare Disease Research Partners (RDRP), a wholly-owned, not for profit subsidiary of the MPS Society whose social objectives are to reinvest any profits for the purpose of education, enhancing needs-led advocacy support, quality of life research and scientific research to the MPS community.

The latest job vacancy for Managing Director of MPS Europe is open for applications.

IMPSN – International MPS Network

Created in April 1992 by Christine Lavery (founder of MPS Society, UK) and with the support and engagement of other MPS organisations around the world including Australia, Austria, Germany, Italy, Norway, Poland and Russia, the MPS community unite to learn and share their experiences in each country and work to promote better care for families and people with MPS and other related illnesses. As well as working with the medical community to develop treatment so that these people could have a better quality of life.

Find out more about the IMPSN >>

Read the latest IMPSN newsletter >>

Specialist centres

The MPS Society has an excellent relationship with the UK Lysosomal Storage Diseases (LSD) Specialist Centres in London, Birmingham, Cambridge and Manchester, working closely with clinicians, healthcare professionals and researchers. Visit the clinics page more for a list of the specialist centres.

Paediatric centres

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GREAT ORMOND STREET HOSPITAL, LONDON

Meet the team

Dr Lara Abulhoul, Dr Maureen Cleary, Dr Anupam Chakrapani, Dr Emma Footitt and Dr James Davison

LSD Team Metabolic Office, Level 7, Southwood Building, Great Ormond Street Hospital NHS Trust, Great Ormond Street, London WC1N 3JH

+44 (0)20 7405 9200

ST MARY'S HOSPITAL, MANCHESTER

Meet the team

Dr Simon Jones, Dr Alex Broomfield and Dr Bernd Schwahn


St Mary’s Hospital
Oxford Road
Manchester
M13 9WL

+44 (0)161 701 2137

+44 (0)161 701 2138

Adult centres



CAMBRIDGE

Meet the team

Dr Patrick Deegan and Dr Li Tee Tan


Cambridge University Hospital NHS Foundation
Department of Medicine
Hills Road
Cambridge
CB2 0QQ


+44 (0)1223 245151

LONDON – NATIONAL HOSPITAL

Meet the team

Dr Robin Lachmann and Dr Elaine Murphy


National Hospital for Neurology & Neurosurgery
Charles Dent
Metabolic Unit
Queens Square
London
WC1N 3BG


+44 (0)207 829 8778

LONDON –
ROYAL FREE HOSPITAL

Meet the team

Dr Derralynn Hughes and Dr Uma Ramaswami


Royal Free Hampstead NHS Trust
Pond Street
London
NW3 2QG


+44 (0)207 7940500



MANCHESTER

Meet the team

Dr Karolina M Stepien, Dr Reena Sharma, Dr Gisela Wilcox and Dr Ana Jovanovic


Salford Royal Hospital NHS Foundation Trust, Department of Adult inherited Metabolic Diseases, Stott Lane, Salford
Greater Manchester
M6 8HD


+44 (0)161 2064365

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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MPS Society, MPS House,

Repton Place, White Lion Road,

Amersham, Buckinghamshire,

HP7 9LP, United Kingdom

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0345 389 9901

Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882.

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© 2020 Society for Mucopolysaccharide Diseases