MPS Society provides useful resources. We are always adding new information so come back regularly to see what we've posted.
Top tips to combat loneliness
We know that living with MPS, Fabry or a related disease can feel daunting and you may feel lonely and isolated. We all feel lonely from...
Fabry Findings - Issue No. 5 - Autumn 2021
Findings from research conducted with the Fabry community by Rare Disease Research Partners on behalf of the Fabry International Network.
Will changes to NICE processes work for rare diseases?
NICE is asking for feedback on the methods and processes they use to decide which rare disease treatments they fund.
Aisha’s top tips for overcoming all fears when transitioning to higher education
My name is Aisha and I did a B.A (Hons) Health Studies at De Montfort University and graduated in 2019. I have a rare genetic condition...
MPS 2021 International Symposium
The 16th International Symposium on MPS and Related Diseases announces opening for registrations to the MPS2021 virtual conference....
MPS I Webinar: Clinical trial and treatment update
Our first MPS I webinar specifically on new treatments brought together clinical experts to answer your questions about clinical trials...
Carers Legal Rights
Caring The Care Act 2014 came into force in April 2015. This act means that local councils and NHS bodies need to consider the wellbeing...
The Mental Capacity Act 2005 – “Best Interests”
This information applies to England and Wales only. What are Best Interests? The Mental Capacity Act 2005 Section 1 (5) introduces the...
Focus on Fabry webinar: Gene therapy updates
This webinar brought together clinical experts to answer your questions about gene therapy updates and how they may affect Fabry...
Mental Capacity Act 2005
The Court of Protection and becoming a deputy for a person who lacks the capacity to make decisions. When a person is deemed not to have...
Sensory sessions
Helen and Julie held a blue-themed messy play sensory session on 12 May in honour of MPS Awareness Week.
Top 10 tips for buying travel insurance when you have MPS, Fabry or a related disease
Finding the right travel insurance can be a challenge; making sure that you have covered all bases and taken all the unexpected...
Benefits Cap
The Benefits Cap is a limit placed on the number of benefits that can be claimed by people aged 16 to 64 years. Benefits that will be...
Carers Allowance
If you care for or look after someone who is disabled, you may be able to claim Carer’s Allowance. You do not have to be related to the...
Claiming free NHS dental treatment
The NHS provides free dental treatment for certain individuals depending on their circumstances, such as age, maternity, household income...
Mental health and wellbeing videos for adults - dealing with anxiety
A series of seven videos aimed to help you deal with anxiety, stress and worry. Diana Thornton is a counsellor and mindfulness teacher...
Mental health and wellbeing videos for adults - managing anxiety
The videos invite our members to manage their anxiety as well as techniques to build resilience. Diana Thornton, who runs the workshops,...
Impact Report 2019/20
As part of moving our resources online, we are starting to upload our back catalogue of magazines. We are starting with our Impact...