Contact details for groups providing information, support and advice for families affected by any of the Lysosomal Storage diseases. They are gathered into:

New Zealand | International | Australian | British | European | North American | South American | Asian

Contact us with details of your group, to be included.

New Zealand Groups

Lysosomal Diseases New Zealand 
John Forman, Chairperson 
125 Cuba St, Petone, Lower Hutt City 
Ph +64 4 566 7707  Fax 04 566 7717 
Email john.forman@xtra.co.nz 

Jenny Noble, Secretary
16 Woodleigh Place, Ohauiti, Tauranga
Ph +64 7 544 8868
Email jenny.noble@xtra.co.nz

International Groups

GOLD - The Global Organisation for Lysosomal Diseases
(a collaboration of patient advocacy groups, researchers and Industry)
PO Box 609, Chalfont St Giles, HP8 4WU, UK
Phone/fax: +44 (0) 1494 870708
Email: Ann.Hale@goldinfo.org
Website http://www.goldinfo.org

ISMRD - The International Advocate for Glycoprotein Storage Diseases
2922 Deerford Street
Lakewood, CA 90712, USA 
Email: info@ismrd.org
Website http://www.ismrd.org 

International Pompe Association 
Luitenant Generaal van heutszlaan 6
3743 JN BAARN
THE NETHERLANDS
tel +31 355 480 461
Email ria.broekgaarden@vsn.nl
Website http://www.worldpompe.org/

Taryn's World 
An information site written for kids and their friends to help them understand genetic diseases and disabilities. 
Website http://www.tarynsworld.org 

Australian Groups

Lysosomal Diseases Australia 
C/- Lysosomal Diseases Research Unit 
Women's and Children's Hospital, Adelaide 
Ph +61 8 8204 7393
Email Slazenkas@medicine.adelaide.edu.au  
Website http://www.lda.org.au 

Australian MPS Society 
PO Box 623 Hornsby, NSW 1630 
Ph +61 2 9476 8411
Email info@mpssociety.org.au  
Website http://www.mpssociety.org.au 

Australian Battens Support Group 
Level 4, 1 Chandos St,  
St. Leonards, NSW 2065 
Email Harry.partridge@partridge.com.au 
Website http://www.battens.org.au

Fabry Support Group Australia Inc. (FSGA)
Contact person: President FSGA Megan Fookes
PO Box 269, Willoughby, NSW 2068, Australia
Ph +61 2 9967 4395
Mobile 0418 452 940
Email megan.fookes@fabry.com.au
Website www.fabry.com.au

Australian Pompe's Association
Ph +61 2 4966 1101
Email cookie22@tpg.com.au
Website http://users.tpg.com.au/cookie22/index.htm

British Groups

CLIMB - Children Living With Inherited Metabolic Diseases 
176 Nantwich Rd
Crewe
Cheshire CW2 6BG
United Kingdom 
Ph +44 845 241 2173
Email info.svcs@climb.org.uk
Website http://www.climb.org.uk 

Society for Mucopolysaccharide Diseases
MPS House, Repton Place
White Lion Road, Amersham
Bucks HP6 6BL
Ph +44 845 389 9901
Email mps@mpssociety.co.uk 
Website http://www.mpssociety.co.uk/ 

Niemann-Pick Disease Group (UK)
Kingslaw House
East Brae, East Wemyss
Fife KY1 4RS, England
Phone +44 1592 580672
Email niemann-pick@zetnet.co.uk
Website http://www.niemannpick.org.uk

Batten Disease Family Association
Heather House
Heather Drive, Tadley
Hampshire RG26 4QR, England
Phone +44 7914 060742
Email bdfa.info@btinternet.com
Website http://www.bdfa-uk.org.uk/

Bee for Battens
The Saoirse Foundation
Castledrum
Keel
Castlemaine
Co Kerry
Ireland
Email info@beeforbattens.org
Website http://www.beeforbattens.org/

European Groups 

Austrian MPS Society
Finklham 90 - 4075 Breitenaich
Austria
Tel +43 7249 47795
Email office@mps-austria.at
Website http://www.mps-austria.at

VML France - Vaincre Les Maladies Lysosomales 
2 ter avenue de France
94300 Massy
Tel +33 1 69 75 40 30
Fax +33 1 60 11 15 83
Email vml@vml-asso.org
Website http://www.vml-asso.org

German MPS Society 
Rupert Mayer Strasse 13 63741  
Aschaffenburg 
Ph +49 602 185 8373
International Secretary Bettina Wildi Bettinawildi@aol.com 
Website http://www.mps-ev.de/index.php

German NCL (Batten Disease) Society
NCL-Gruppe Deutschland e.V.
Wilhelm RÜter, Am Waldbach 23
32339 Espelkamp
Telefon +49 577 13255
Website http://www.ncl-deutschland.de

Italian MPS Society 
National Office 
Via Savona 13 
20144 Milan, Italy 
Ph +39 0283 241 292
Email info@mucopolisaccaridosi.it
Website http://www.mucopolisaccaridosi.it 

Polish MPS Society
ul. Radnych 9A
05-503 Gloskow, Poland
Tel +48 22 715 3319
Email tmatulka@wp.pl
Website http://www.mps-society.nazwa.pl/htm/en/index.php

ADAC - Spain
Association for Growth, Developmental and Lysosomal Disorders
Enrique Marco Dorta 6
41018 Seville
Tel +34 954 989 889
Email a.d.a.c@telefonica.net
Website http://www.adac-es.net (Note: The website link is no longer active.)

MPS Spain
C/- Anselm ClavÉ 1
08 787 La Pobla de Claramunt
Barcelona
Tel +34 617 080 198
Email jorgecruz@eresmas.com
Website: http://www.mpsesp.org

Alliance Sanfilippo
BP 88
92203 – Neuilly sur Seine Cedex
France
Email contact@alliancesanfilippo.com
Website http://www.alliancesanfilippo.com/us/alliance.php

Turkish MPS Society
Tel + 232 347 53 11
Email mpsturk@mynet.com
Website http://www.mpsturk.com/

North American Groups

Lysosomal Diseases Network
Website http://www.lysosomaldiseasenetwork.org/

National MPS Society  
102 Aspen Drive 
Downingtown, PA 19335, USA 
Ph +1 610 942 0100
Email info@mpssociety.org 
Website http://www.mpssociety.org/ 

National Niemann-Pick Disease Foundation
415 Madison Ave, PO Box 49
Ft. Atkinson, WI 53538
Ph +1 877 287 3672
Email nnpdf@idcnet.com
Website http://www.nnpdf.org

National Tay-Sachs and Allied Diseases Association Inc  
2001 Beacon Street, Suite 204  
Brighton, MA 02135, USA 
Ph +1 800 906 8723
Email info@ntsad.org  
Website http://www.ntsad.org/ 

Batten Disease Support and Research Association  
120 Humphries Dr., Suite 2 
Reynoldsburg, OH 43068, USA 
Ph +1 800 448 4570 
Email: bdsra1@bdsra.org 
Website http://www.bdsra.org/ 

Fabry Support and Information Group 
108 NE 2nd Street, Suite C 
P.O. Box 510, Concordia, MO 64020, USA 
Ph +1 660 463 1355
Email Jack@Fabry.org  
Website http://www.fabry.org/

National Gaucher Foundation 
5410 Edson Lane, Suite 260 
Rockville, Maryland, 20852-3130, USA 
Ph +1 800 428 2437 
Email  ngf@gaucherdisease.org 
Website http://www.gaucherdisease.org/
Kids' website: http://www.gaucherkids.org/index.htm

Children's Gaucher Research Fund
P.O. Box 2123, Granite Bay, California
95746-2123 USA
Tel: +1 916 797 3700
Email research@childrensgaucher.org 
Website http://www.childrensgaucher.org/index.html

Canadian MPS Society 
P O Box 64714, Unionville 
Ontario L3R 0M9, Canada 
Ph +1 905 479 8701 
Email patty@mpssociety.ca 
Website http://www.mpssociety.ca/ 

Canadian Fabry Association
Adrian (Ed) Koning, President
9011 142 St NW
Edmonton, Alberta T5R 0M6
Canada
Tel: +1 780 489 0012
Fax: +1 780 443 4959
Email amkoning@telus.net
Website www.fabrycanada.com

Hunter's Hope Foundation
P.O. Box 643
6368 West Quaker Street
Orchard Park, NY 14127, USA
Tel: +1 716 667 1200
Email info@huntershope.org
Website www.huntershope.org/site/PageServer

South American Groups

SBMPS - Sociedade Brasileira de Mucopolissacaridoses 
Quadra Única nº 15 Jardim Eldorado 
IAPI - Salvador - BA CEP 40310-110 
Fone +55 71 386 4079 
Email sociedade@mpsbrasil.cjb.net  
Website www.mpsbrasil.org.br

Asian Groups

Malaysia Metabolic Society (Persatuan Metabolik Malaysia)
Email SetiausahaMMS@gmail.com
Website www.mms.org.my/home/

Contact us with details of your group, to be included.