National Referral Laboratory

Support Groups and Further Information

The following is a list of support groups for families and friends of patients with lysosomal and peroxisomal disorders. Genetic support groups for other inherited disorders are also listed. In addition to Australian support groups, other the regional and international services are listed (where the address is available to us).

If you have any questions that you would like answered on inherited diseases, genetics or diagnostic tests, please contact your local Medical Genetics Service. These services are most often located at a Children's Hospital or a teaching Hospital or Medical Centre in major regional cities.

Alternatively, email or write to this Department and we will try to put you in contact with the appropriate counselling service

AUSTRALIA

• Lysosomal Diseases Australia (LDA)
  Women's & Children's Hospital
  72 King William Road
  North Adelaide SA 5006
  Internet: http://www.lda.org.au
  Telephone: +61 (0)8 8161 7293 (Chairman) or 61 (0)8 8161 7393 (Public Officer)
  Facsimile: 61 (0)8 8161 7100
  email: john.hopwood@adelaide.edu.au or
  sophie.lazenkas@adelaide.edu.au

• Mucopolysaccharide and Related Diseases Society Aust. Ltd.
  PO Box 623
  Hornsby NSW 1630
  Internet: http://www.mpssociety.org.au/
  Telephone: +61 (0)2 4577 3192
  Facsimile: +61 (0)2 4577 5908
  email: info@mpssociety.org.au

• The Australian Leukodystrophy Support Group
  10 Mitchell Street
  Mentone VIC 3194
  Internet: http://www.alds.org.au/
  Telephone: 61 (0)3 9584 7070
  Facsimile: 61 (0)3 9583 4379
  email: leuko@vicnet.net.au

• Association of Genetic Support of Australasia (AGSA)
  66 Albion Street
  Surry Hills NSW 2010
  Internet: http://www.agsa-geneticsupport.org.au/
  Telephone: +61 (0)2 9211 1462
  Facsimile: +61 (0)2 9211 8077
  email: info@agsa-geneticsupport.org.au

• Australian Chapter of the Batten Disease Support & Research Association
  5 Oakhurst Close
  Dapto NSW 2530
  Internet: http://www.battens.org.au/
  email: gvjcando@ozemail.com.au

• Gaucher Association of Australia
  PO Box 983
  Sunbury VIC 3429
  Telephone: +61 (0)3 9740 7203
  email: gaucher@telstra.com

• Fabry Support Group Australia Inc. (FSGA)
  PO Box 269
  Willoughby NSW 2068
  Contact: President FSGA, Megan Fookes
  Telephone: +61 (0)2 9967 4395
  Mobile: 0418 452 940
  email: megan.fookes@fabry.com.au
  Internet: http://www.fabry.com.au/

• Australian Cystic Fibrosis Association
  PO Box 254
  North Ryde NSW 2113
  Telephone: +61 (0)2 9878 5250
  Facsimile: +61 (0)2 9878 5058
  In addition there are individual State CF Associations within Australia. The Australian Association will be able to provide access information.

• Galactosaemia Society of Australia
  11 Marlborough Street
  College Park SA 5069
  Telephone: +61 (0)8 8362 9219
  Facsimile: +61 (0)8 8332 7446

• Acid Maltase Deficiency Association of Australia
  2/1 Parnee Street
  Swan Hill VIC 3585
  Telephone: +61 (0)3 5032 4093

INTERNATIONAL

Asia/Australasia

• NZ Lysosomal Storage Diseases Support Group
  125 Cuba Street, Petone
  Lower Hutt City 6009
  NEW ZEALAND
  Internet: http://www.ldnz.org.nz
  Telephone: +64 (0)4 566 7707
  Facsimile: +64 (0)4 566 7717
  email: john.forman@xtra.co.nz

• Leukodystrophies Information & Support Team
  PO Box 42183
  Orakei Auckland
  NEW ZEALAND
  Telephone: +64 (0)9 521 2884
  Facsimile: +64 (0)9 521 4692

• Japanese Society for the Patients and the Families with Mucopolysaccharidoses
  Secretary-General
  161-33 Zoah-cho
  Fukuyama-shi
  Hiroshima 721
  JAPAN
  Internet: http://www.mps-japan.org/
  email: office@mps-japan.org

North America

• The National MPS Society
  PO Box 14686
  Durham, NC 27709-4686
  USA
  Internet: http://www.mpssociety.org
  Telephone: +1 877 677 1001
  Facsimile: +1 919 806 2055
  email: info@mpssociety.org

• The Canadian Society for MPS & Related Diseases Inc
  PO Box 30034
  RPO Parkgate
  North Vancouver, BC V7H 2Y8
  CANADA
  Internet: http://www.mpssociety.ca
  Telephone: +1 604 924 5130
  Toll Free: 1 800 667 1846
  Fax: +1 604 924 5131
  Email: info@mpssociety.ca

• National Gaucher Foundation
  2227 Idlewood Road, Suite 12
  Tucker, GA 30084
  USA
  Internet: http://www.gaucherdisease.org
  Telephone: + 800 504 3189
  Facsimile: +1 770 934 2911

• National Niemann-Pick Disease Foundation Inc
  PO Box 49
  401 Madison Ave, Suite B
  Ft. Atkinson WI 53538
  USA
  Internet: http://www.nnpdf.org
  Telephone: +1 877 287 3672
  Facsimile: +1 920 563 0931
  email: nnpdf@nnpdf.org

• National Tay-Sachs & Allied Diseases Assoc Inc
  2001 Beacon St, Suite 204
  Brighton MA 02135
  USA
  Internet: http://www.ntsad.org
  Telephone: +1 800 906 8723
  Facsimile: +1 617 277 0134
  email: info@ntsad.org

• Batten Disease Support & Research Association
  120 Humphries Dr, Suite 2
  Reynoldsburg, OH 43068
  USA
  Internet: http://www.bdsra.org
  Telephone: +1 740 927 4298
  Toll free: 1 800 448 4570
  email: bdsra1@bdsra.org

• International Society for Mannosidosis & Related Diseases Inc
  PO Box 328
  Dexter, MI 48130
  USA
  Internet: http://www.mannosidosis.org
  Telephone: +1 734 449 8222
  Facsimile: +1 734 449 2282
  email: info@ismrd.org

• Acid Maltase Deficiency Assoc Inc
  PO Box 700248
  San Antonio, TX 78270-0248
  USA
  Internet: http://www.amda-pompe.org/
  Telephone: +1 210 494 6144
  Facsimile: +1 210 490 7161
  email: tianrama@aol.com

• United Leucodystrophy Foundation
  2304 Highland Drive
  Sycamore, IL 60178
  USA
  Internet: http://www.ulf.org
  Telephone: +1 800 728 5483
  Facsimile: +1 815 895 2432
  email: office@ulf.org

• Association for Glycogen Storage Disease
  PO Box 896
  Durant, IA 52747
  USA
  Internet: http://www.agsdus.org
  email: maryc@agsdus.org

Europe

• The Society for Mucopolysaccharide Diseases
  MPS House
  Repton Place, White Lion Road
  Amersham Bucks HP7 9LP
  UK
  Internet: http://www.mpssociety.co.uk
  email: mps@mpssociety.co.uk

• Gauchers Association
  3 Bull Pitch
  Dursley Gloucestershire GL11 4NG
  UK
  Internet: http://www.gaucher.org.uk
  Telephone: +44 1453 549 231

• Vaincre les Maladies Lysosomales
  2 Ter Avenue De France
  91300 Massy
  FRANCE
  Internet: http://www.vml-asso.org/
  Telephone: +33 (0)1 6975 4030
  Facsimile: +33 (0)1 6011 1583

• Vereniging Spierziekten Nederland
  Lt. Gen. Van Heutszlaan 6
  3743 JN Baarn
  THE NETHERLANDS
  Internet: http://www.vsn.nl
  Telephone: +31 (0)35 548 0480
  email: vsn@vsn.nl

• Children Living with Inherited Metabolic Diseases
  Climb Building
  176 Nantwich Road
  Crewe, Cheshire CW2 6BG
  UK
  Internet: http://www.climb.org.uk
  Telephone : +44 (0)845 241 2172
  Facsimile : +44 (0)845 241 2174
  email: info.svcs@climb.org.uk

• The Children's Mitochondrial Disease Network
  Mayfield House
  30 Heber Walk
  Chester Way Northwich CW9 5JB
  UK
  Internet: http://www.emdn-mitonet.co.uk
  Telephone : +44 (0)1606 43946
  email: info@cmdn.org.uk

If you wish to add the name of related support groups to the above list, please contact Dr Michael Fietz.

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