MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Top tips on homeschooling
Gordon Harvey, MPS Society Trustee and father, shares his top tips on homeschooling.
Implications of the Coronavirus Act 2020 for adult health and social care services
Steve, is here to fill you in on the key points of the Coronavirus Act 2020 and the particular implications on adult health and social care.
Coping with your family's psychological health
Right now this might feel like a particularly stressful time and so it's really important to look after our psychological health.
Staying active at home with Michelle Wood
Michelle Wood is a physiotherapist at GOSH who has shared her physio advice, ideas, hints and tips to help you keep active at home.
Katrina's video - Fabry Awareness Month
Takeda have produced a film for Fabry awareness month this April highlighting what it is like to live with Fabry.
10 tips for taking care of yourself during lockdown
Claire, parent of children with MPS, doctor and mindfulness teacher has produced a short video giving tips on self-care during lockdown.
Simon's video - Fabry Awareness Month
In this video Simon discusses what life was like before he received a diagnosis and how it now affects him and his family.
Disability Living Allowance and Personal Independence Payments
Advice on managing the transition between Disability Living Allowance (DLA) and Personal Independence Payments (PIP) for people with Fabry.
Farber Disease Factsheet
This factsheet provides information about Farber disease, a rare, progressive disease caused by a deficiency (reduced function) of an enzyme called acid ceramidase.
Fabry Findings - Issue No. 3 - Spring 2020
Findings from research conducted with the Fabry community by Rare Disease Research Partners on behalf of the Fabry International Network.
Be prepared: emergency information for admission to hospital
Emergency information for admission to hospital that you should have to hand.
NHS England and shielding (updated 24 June 2020)
Many of you may have received a text message or a letter from NHS England about shielding. What is it?
Covid
Please find below some updated information from our adult clinical centres. The clinical centres are working tirelessly to manage the...
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...