Lysosomal Disorders Unit

Patient Associations exist for many of the Lysosomal Storage Disorders. They are usually voluntary groups of people who can provide invaluable information, advocacy and support.

For the most recent up to date list of LSD patient organisations please visit the LSD collaborative website

https://www.lsdcollaborative.org.uk/#members

  Disease Patient Support Group Telephone Email Website
Pompe Association of Glycogen Storage Disorders 0300 1232790  info@agsd.org.uk

www.agsd.org.uk

Batten Batten Disease Family Association 0800 0469832

admin@bdfa-uk.org.uk

www.bdfa-uk.org.uk

Tay Sachs and Sandhoff Cure and Action for Tay Sachs Foundation  

info@cats-foundation.org

www.cats-foundation.org

Gaucher Gaucher Association 01453 549231

ga@gaucher.org.uk

www.gaucher.org.uk

Krabbe Krabbe Uk    

https://www.krabbeuk.org/

Mucopolysaccharidoses (MPS), mucolipidoses (ML), metachromatic leukodystrophy (MLD), Fabry and related lysosomal disorders (including lysosomal acid lipase deficiency/LAL-D)  MPS Society 0345 3899901

mps@mpssociety.org.uk

www.mpssociety.org.uk

Niemann-Pick Niemann-Pick UK 0191 4150693

info@niemann-pick.org.uk

www.niemann-pick.org.uk

 

 

Additional resources

 

Alex The leukodystrophy charity

Helpline 020 7701 4388

https://www.alextlc.org/

Registered charity number 1106008

 

Cambridge rare disease network

https://camraredisease.org/

Registered Charity Number: 1166365

 

Contact  - for families with disabled children

Helpline 0808 808 3555

https://www.contact.org.uk/

Registered charity number 284912

 

Genetic Alliance UK

https://www.geneticalliance.org.uk

Registered charity number 1114195 

 

Metabolic Support UK

Helpline  0845 241 2173

https://www.metabolicsupportuk.org/

Registered charity number 1089588

 

Rare disease UK

https://www.raredisease.org.uk/

Registered charity number 1114195 

 

SwanUK (syndromes without a name)

020 7831 0883

https://www.undiagnosed.org.uk/

Registered charity number 05772999

 

Addenbrooke’s Charitable Trust  ACT

Tel: 01223 217757

https://www.act4addenbrookes.org.uk/

Registered charity number 1170103

 

PALS

https://www.cuh.nhs.uk/have-your-say/patient-advice-and-liaison-service-pals

please link directly to PALS website

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