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North America
ISMRD
International Advocate for
Glycoprotein Storage Diseases
(aka; International Society of
Mannosodosis & Related Diseases)
John Forman, President
Email: john.forman@xtra.co.nz
2922 Deerford Street
Lakewood, CA 90712
Email: info@ismrd.org
Website http://www.ismrd.org
National MPS Society
P.O. Box 14686
Durham, NC 27709-4686, USA
Ph: (919) 806-0101 Fax: (919) 806-2055
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 877-287-3672 Fax 920-563-0931
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 800-906-8723 Fax 617-277-0134
Email info@ntsad.org
Website http://www.ntsad.org/
Batten Disease Support and Research Association
Lance Johnston, Executive Director
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
Jack Johnson, Founder
108 NE 2nd Street, Suite C
P.O. Box 510, Concordia, MO 64020, USA
Ph (660) 463-1355 Fax (660) 463-1356
Email Jack@Fabry.org
Website http://www.fabry.org/FSIG.nsf/Pages2/HomePage
National Gaucher Foundation
2227 Idlewood Road, Suite 12
Tucker, GA, 30084, USA
Ph (800-504-3189)
email ngf@gaucherdisease.org
Website http://www.gaucherdisease.org/ngfinfo.htm
The Canadian Society for Mucopolysaccharide & Related Diseases, Inc.
P O Box 30034, RPO Parkgate
North Vancouver, BC V7H 2Y8, Canada
Ph: (604) 924-5130/(800) 667-1846
Fax: (604) 924-5131
Email patty@mpssociety.ca
Website http://www.mpssociety.ca
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 MPS Society
Secretary, David Oliver
17 Raphael Drive, Hornsby Heights, NSW 2077
Ph 02 9477 2440
Email possumsnest@ozemail.com
Website http://www.mpssociety.org.au Australian Battens Support Group
Harry Partridge
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
Megan Fookes (President)
Email meganfookes@ozemail.com.au
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Britain
CLIMB - Children Living With Inherited Metabolic Diseases
The Quadrangle, Crewe Hall
Weston Road, Crewe
Cheshire CW1 6UR
UK
Ph 01270 250221 Fax 01270 250244
Email info@climb.org.uk
Website http://www.climb.org.uk
Batten Disease Family Association
Jan Sablitzky, Development Officer
c/o Heather House, Heather Drive
Tadley
RG26 4QR
UK
Ph 115 965 4815
Email BDFA.info@btinternet.com
Batten Support & Research Trust
Bob Adams
16 Melbourne Street, Westham
Weymouth, Dorset DT4 ONG
UK
Email bobadams@bsrt.org.uk
Website http://www.bsrt.org.uk
British MPS Society
Christine Lavery, Director
46 Woodside Rd
Amersham, Bucks HP6 6AJ
UK
Ph 01494 434156 Fax 01494 434252
Email mps@btconnect.com
Website http://www.mpssociety.co.uk/index.htm
Niemann-Pick Disease Group (UK)
Toni Mathieson
National Development Manager
11 Greenwood Close
Fatfield
Washington
NE38 8LR
ENGLAND
Ph 44 0 191 415 0693
Email niemann-pick@zetnet.co.uk
Website http://www.niemannpick.org.uk
International Pompe Association
Kevin O'Donnell, Group leader
2 Summerside Place
Edinburgh, EH6 4PA, Scotland
Ph 0131 554 2791
Email kevin@pompe.org.uk
Website http://www.pompe.org.uk/
Europe
Vaincre Les Maladies Lysosomales
9, place du 19 mars 62
91 035 Evry Cedex, France
Tel 01 60 91 75 00 Fax 01 69 36 93 50
Email : vml@provnet.fr
Website http://www.provnet.fr/vml/fr/accueil.htm
German MPS Society
Rupert Mayer Strasse 13 63741
Aschaffenburg
Ph 06021/85 83 73
Fax 06021/85 83 72
International Secretary Bettina Wildi Bettinawildi@aol.com
Website http://mps.muc.dtag.de/
German NCL (Batten Disease) Society
NCL-Gruppe Deutschland e.V.
Wilhelm Rüter
Am Waldbach 23
32339 Espelkamp
Telefon 05771 3255
Website http://www.ncl-deutschland.de
Italian MPS Society
National Office
Via Savona 13
20144 Milan, Italy
Ph 02 8324 1292
Website http://www.mucopolisaccaridosi.it
Secretary, Anna Serafini
Ph/Fax 0131 264149
Email info@mucopolisaccaridosi.it
New Zealand
Lysosomal Diseases New Zealand
Jenny Noble
16 Woodleigh Place
Ohauiti, Tauranga
New Zealand
Secretary Treasurer
Lysosomal Diseases New Zealand
Board Member ISMRD
The International Advocate for Glycoprotein Storage Diseases
Ph +64 7 544-8868
Fax +64 7 544-8867
Email jenny.noble@xtra.co.nz
Web http://www.ldnz.org.nz
http://www.ismrd.org
South America
SBMPS - Sociedade Brasileira de Mucopolissacaridoses
Prof Josué Félix de Araújo - Coordenador Geral
Quadra única nº 15 Jardim Eldorado
IAPI - Salvador - BA CEP 40310-110
Fone/Fax (71) 386-4079
Email webmaster@mpsbrasil.cjb.net
Website http://www.mpsbrasil.org.br
(Note: the website has information in Portuguese and English) |
