MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Webinar on coronavirus (COVID-19) and living with an inherited metabolic disease (IMD) 23 March 2020
Thank you to the panel members who joined today's webinar and to the British Inherited Metabolic Disease Group (BIMDG), Metabolic Support...
Advice for patients, parents and guardians on inherited metabolic disease and Coronavirus (COVID-19)
Some practical general information and links to reliable websites for anyone concerned about inherited metabolic diseases and Coronovirus.
MPS National Conference 2019 Interviews
We met with Louis Garthwaite and Daniella Vandepeer who shared their experiences with attending conference as MPS families. Jean Mercer...
Poster presentation - Prevalence of intestinal disease as terminal event in MPS III Sanfilippo
The MPS Society was aware, through its work with patients and their families, that individuals with MPS III have a wide range of...
Poster presentation - Supporting adults living with MPS diseases
Members of the MPS Society were invited to take part in an online survey investigating their views about living with MPS disease. The...
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