You don't have to navigate this alone
Support services & organisations
Charities and patient groups offering advice, nurse support, benefits guidance and community connection for people affected by Fabry disease in the UK.
MPS Society
UK-wideThe MPS Society (the Society for Mucopolysaccharide and Related Diseases) is the main UK charity supporting people affected by Fabry disease and other lysosomal storage disorders. It offers a family support team, specialist nurses, welfare and benefits advice, and community events connecting families across the country.
- Website
- mpssociety.org.uk
- Focus
- Family support, specialist nurse advice, welfare & benefits guidance, community events
Fabry International Network (FIN)
InternationalFIN is a global umbrella organisation connecting Fabry patient associations worldwide, including UK representation. It shares international research updates, patient perspectives, and connects people to national organisations and each other.
- Website
- fabrynetwork.org
- Focus
- Global patient advocacy, research awareness, connecting national Fabry communities
Genetic Alliance UK
UK-wideAn umbrella charity for people affected by genetic, rare and undiagnosed conditions in the UK. Offers guidance on navigating diagnosis, genetic testing, and connects families to condition-specific groups.
- Website
- geneticalliance.org.uk
- Focus
- Rare disease advocacy, signposting, family guidance
Rare Disease UK
UK-wideCampaigns for improved rare disease policy and provides information about the UK Rare Diseases Framework, which shapes how conditions like Fabry disease are diagnosed and cared for across the NHS.
- Website
- raredisease.org.uk
- Focus
- Policy, awareness, patient voice
Wider support worth knowing about
Kidney & heart charities
Because Fabry disease often affects the kidneys and heart, organisations such as Kidney Care UK and the British Heart Foundation offer relevant condition-management advice alongside your specialist team.
Mental health & wellbeing
Living with a chronic, rare condition can affect emotional wellbeing. Your specialist centre can refer you to psychological support, and services like Mind offer general mental health guidance and helplines.
Genetic counselling
Available through your specialist metabolic centre — helpful for understanding inheritance, family testing options, and family planning decisions.
Financial & welfare advice
The MPS Society's welfare team and Citizens Advice can help with Personal Independence Payment (PIP), Access to Work, and other support relevant to living with a long-term condition.
Charity details can change. Please confirm current contact details and services directly via each organisation's website before relying on them, and let your specialist team know if you're struggling — they can point you to the right support.