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.

Gaucher

Gauchers Association
3 Bull Pitch
Curley
Gloucestershire
GL11 4NG

Tel/fax: (01453) 549231

Email: ga@gaucher.org.uk
Gauchers Association

Executive Director: Tanya Collin-Histed
Registered Charity No: 1095657


Fabry, MLD & MPSs

(MLD: Metachromatic leucodystrophy  MPS: Mucoploysaccharidoses)

The Society for Mucopolysaccaride and Related Diseases            
MPS House
Repton Place
White Lion Road
Buckinghamshire
HP7 9 LP

Tel:  0845 3899901
Fax: 0845 3899902

Email: mps@mpssociety.co.uk

Society for Mucopolysaccharide Diseases (the MPS Society)

Chief Executive: Mrs Christine Lavery
Registered Charity No: 287034


Krabbe

Save Babies Through Screening Foundation UK

Tel: 01943 878770

Email: patroberts@savebabiesuk.org

Save Babies Through Screening Foundation UK


Pompe

International Pompe Association    

                                
International Pompe Association


Association for Glycogen Storage Diseases UK

Tel: 01730 231554

Email: allan@pompe.org.uk

Pompe pages

 

Pompe Co-ordinator: Allan Muir
Registered Charity No: 327841


Muscular Dystrophy Campaign – now incorporating pompe disease

7-11 Prescott Place
London
SW4 6BS

Tel: 02077 208055
Fax: 02074 980670

Email: info@muscular-dystrophy.org

Muscular Dystrophy Campaign

Registered Charity No: 205395


Contact a Family    

Contact a Family provide advice, information and support to the parents of all disabled children - no matter what their disability or health condition. They also enable parents to get in contact with other families, both on a local, national and (in very rare cases) international basis.

Tel: 08088 083555

Email: helpline@cafamily.org.uk

Contact a family

Registered Charity No: 284912


For children

CLIMB (Children living with Inherited Metabolic Diseases)  
CLIMB building
176 Nantwich Road
Crewe
CW2 6BG

Tel: 08006 523181
Fax: 08452 412174

Email: info.svcs@climb.org.uk

CLIMB (Children living with Inherited Metabolic Diseases)

Registered Charity No: 1089588


Tay Sachs

National Tay-Sachs & Allied Diseases Association  (US)      
2001 Beacon Street
Suite 204
Boston, MA 02135

Email: info@ntsad.org

National Tay-Sachs & Allied Diseases Association

 

CATS - Cure and Action for Tay-Sachs

CATS - Cure and Action for Tay-Sachs


Niemann-Pick

Niemann-Pick Disease Group (UK)                       
11 Greenwood Close
Fatfield, Washington, Tyne and Wear
NE38 8LR 

Tel: 01914 150693

Email: info@npuk.org

Niemann-Pick Disease Group (UK)   


Associations for Physicians

GOLD - Global Organisation for Lysosomal Diseases
An international collaboration of scientific and medical associations, patient groups, and commercial organisations dedicated to improving the lives of all patients with a lysosomal disease.

Email: enquiries@goldinfo.org
 


Lysosomal Acid Lipase (LAL) Deficiency/ Cholesterol Ester Storage Disease (CESD)/ Wolman Disease

British Liver Trust

British Liver Trust 
2 Southampton Road 
Ringwood 
BH24 1HY 

Free Helpline: 08006 527330

Tel: 01425 481320
Fax: 01425 481335 

Email: info@britishlivertrust.org.uk  

British liver trust