MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
CSAC open day 2024
Fiona, Chair of CSAC, presents a collection of talks from researchers who have received funding from the Committee. This is possible thanks to the fundraising and donations of our supporters and the profits from RDRP each year to the MPS Society.
CSAC open day webinar - 10 October 2023
CSAC webinar chaired Dr Fiona Stewart explains how CSAC play an integral role in helping our rare disease community.
BBC documentary highlights the importance of Newborn Screening for early diagnosis
BBC documentary highlights the importance of Newborn Screening for early diagnosis.
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...
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...