After listening to the challenges our Fabry community faces, we are offering insights, practical advice and links to key resources on the social and financial support available for Fabry patients.
Understanding community needs
We engaged our Fabry community in a discussion about the biggest financial and social challenges they face. Through WhatsApp conversations, the Facebook Support Hub and our monthly coffee morning, we gathered real-life experiences to highlight the pressing needs of those living with Fabry disease.
We recognise the stress and anxiety that recent media coverage relating to changes and cuts to the UK Welfare System will cause and we want to ensure that you are equipped to identify and gain access to support you are entitled to.
UK disability benefits overview
The key benefits for those with additional care or mobility needs are:
Disability Living Allowance (DLA) - for children under 16 years old with care/mobility needs
Personal Independence Payment (PIP) – for individuals aged 16-64 with extra care/mobility needs
Attendance Allowance – for those at state pension age requiring care
Employment Support Allowance (ESA) – for individuals unable to work due to health conditions
The MPS Society does not provide direct assistance in relation to means tested benefits, but we can work with you to complete disability related benefits. You can use the Turn2Us benefits calculator to assess eligibility.
Navigating the disability benefit application process
Applying for disability related benefits can be daunting, it can feel a bit like you have to bare your soul and share a lot on intimate and personal information.
Our PIP support tool helps members assess each question and compile necessary medical evidence. Given UK welfare changes, strong medical documentation is essential and this is the first step we use to support you to navigate the system.
For Scottish residents, information on the Scottish adult disability payment is available here and we have adapted our PIP Support Tool accordingly.
These are some helpful resources:
Disability Rights UK - How to apply for PIP
Benefits and Work - Understanding PIP assessments
Scope UK - Challenging a PIP decision
Social support and community resources
Social support is crucial alongside financial assistance. When we think about the social support that our Fabry community may wish to access, some of the key ones are:
Emotional support – family, friends and groups reduce stress
Practical support – transport, meal prep and household help via statutory or charitable services
Informational support – guidance from advocacy groups and professionals
Peer support – connecting with others through groups and forums
Mental Health support – therapy and counselling for emotional well-being
There is no doubt that a strong support system enhances quality of life for those with Fabry disease, so please get in touch with us it you would like to chat about what this might look like for you.
For more information, contact Alison.
Resources
The importance of clinical guidelines
Sophie Thomas from the MPS Society and James Davison, consultant in paediatric metabolic medicine at Great Ormond Street Hospital in London, explain the development and purpose of clinical guidelines at MPS Matters 2025.
Barriers and facilitators to clinical trial participation: Improving accessibility, logistics and awareness
This poster is based on survey data collected from delegates who attended the Fabry Matters Conference in 2024 and offers a platform for RDRP to share insights directly shaped by the patient community.
Living well with Fabry: a shared decision-making toolkit
This toolkit has been developed in collaboration with people living with Fabry and Fabry specialists and can help you talk about some of the symptoms that people have told us impact them the most.