Since its 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 (the LSD Collaborative), a patient organisation representing those affected by lysosomal storage diseases, including MPS diseases.
The LSD Collaborative was established in 2009, but the friendships between the organisations started long before then.
The group is made up of representatives from 10 other organisations:
The Fabry International Network is a separate group very similar to the LSD Collaborative, but it’s solely for Fabry disease.
We recently conducted a survey, 'Lysosomal Storage Disorder Clinical and Homecare Services in the UK 2020'. Take a look at it here.
In addition, we are a founding member of MPS Europe (established November 2017) and the International MPS Network, working to share best practices, 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. It also works with the medical community to develop treatment so that these people could have a better quality of life. The first IMPS symposium was held in 2002 in Paris and was jointly hosted by the MPS Society and France.
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. Our current specialised centres were commissioned by NHS’s Highly Specialised Services in 2005. Visit the clinics' page more for a list of the specialist centres.
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