MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Poster presentation - Audit of rare disease clinical trial support service
Patient retention in rare disease clinical trials is crucial when considering the limited patient numbers available. It has been reported...
Poster presentation - Understanding Fabry in Families study
Jacqueline Adam presents the findings of the 'Understanding Fabry in Families Study' as a poster submitted to WORLDSymposium™ 2020. The...
Gene therapy for MPS
The American Society of Gene & Cell Therapy (ASGCT) have developed a series of patient-friendly resources to educate on gene therapy...
Research article - Pathway to diagnosis and burden of illness in MPS VII
Background Mucopolysaccharidosis type VII (Sly disease, MPS VII), is an ultra-rare, multi-symptom disease with variable clinical...
Defining the MPS Society vision
Findings from our stakeholder survey
Understanding Fabry disease - information for parents and families
This booklet is designed to help anyone living with or affected by Fabry disease.
Getting work and staying supported at work
Presentation slides from Dr Xanthe Whittaker at the first meeting with our young adults discussion group. This is the first of two...
Fabry Findings - Issue No. 2 - Winter 2019
Findings from research conducted with the Fabry community by Rare Disease Research Partners on behalf of the Fabry International Network.
MPS Society sponsorship form
Use this sponsorship form to raise money for your MPS Society fundraising event.
MultiMe: A support network for people with learning disabilities and their circles of support
MPS National Conference 2019 MultiMe: A support network for people with learning disabilities and their circles of support By Charles...
Role of SALT: assessment of eating, drinking and swallowing by Louise Emerson
MPS National Conference 2019 Role of SALT: assessment of eating, drinking and swallowing by Louise Emerson Specialist Speech and Language...
Why is my MPS child walking less and what can be done to help? By Si Santra
MPS National Conference 2019 Why is my MPS child walking less and what can be done to help? By Si Santra Birmingham Children's Hospital
Coming to terms with an MPS diagnosis - The Emotional Journey by Claire Garthwaite
MPS National Conference 2019 Coming to terms with an MPS diagnosis - The Emotional Journey by Claire Garthwaite A parents perspective
Fabry and my family by Jane McKenna
Focus on Fabry - Expert and Patient Meeting 2019 Fabry and my family by Jane McKenna A different journey
Fabry disease - Neurology update by Mark Roberts
Focus on Fabry - Expert and Patient Meeting 2019 Fabry disease –Neurology Update by Dr Mark Roberts Manchester Centre for Adult Metabolic...
Fabry Disease - What to look for in children by Anupam Chakrapani
Focus on Fabry - Expert Patient Meeting 2019 Fabry Disease – What to look for in children by Anupam Chakrapani Paediatrician at Great...
Fabry diseases - What causes my symptoms? by Dr Ana Janovic and Mark Roberts
Focus on Fabry - Expert and Patient Meeting 2019 Fabry disease – What causes my symptoms? By Dr Ana Janovic and Mark Roberts Manchester...
Fabry in Families by Jacqueline Adam
Focus on Fabry - Expert and Patient Meeting 2019 Fabry in Families by Jacqueline Adam Clinical and Communications Lead at MPS Commercial