Clinic Disorders Homecare Patient associations Funding arrangements Research and publications Contacts

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

 

 

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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

 

 

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Krabbe

Save Babies Through Screening Foundation UK

Tel. 01943 878 770

patroberts@savebabiesuk.org

> Save Babies Through Screening Foundation UK

 

 

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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: 020 7720 8055
Fax: 020 7498 0670

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: (0808) 8083555

Email: helpline@cafamily.org.uk
> Contact a Family
Registered Charity No. 284912

 

 

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For children

 

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

Tel: 0800 6523181
Fax: 0845 2412174

Email: info.svcs@climb.org.uk
> CLIMB (Children living with Inherited Metabolic Diseases)
Registered Charity No. 1089588

 

 

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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

 

 

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Niemann-Pick

 

 

Niemann-Pick Disease Group (UK)                       
11 Greenwood Close
Fatfield, Washington, Tyne and Wear
NE38 8LR
Email: niemann-pick@zetnet.co.uk
> Niemann-Pick Disease Group (UK)   

 

 

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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
> Global Organisation for Lysosomal Diseases (GOLD)

 

 

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

 

Climb (Children living with Inherited Metabolic Diseases)

CLIMB

Climb Building
176 Nantwich Road
Crewe
Cheshire, UK
CW2 6BG

Office Hours: 9am - 5pm, M-F

Tel: 0845 241 2173
Fax: 0845 241 2174

Helpline Hours: 10am - 4pm, M-F

Freephone: 0800 652 3181

> CLIMB (Children living with Inherited Metabolic Diseases)
Registered Charity No. 1089588

 

 

 

British Liver Trust

British Liver Trust
2 Southampton Road
Ringwood
BH24 1HY

Free Helpline: 0800 652 7330

Tel: 01425 481320
Fax: 01425 481335
Email: info@britishlivertrust.org.uk  

 

> British liver trust

 

 

 

 

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