AUSTRALIA
Contact Name: Vanessa Ede-Scott
Position: Honorary President
Address (National Office): MPS Society National Office
PO Box 623
Hornsby
NSW 1630
Tel (National Office): (02) 9476 8411
Email (National Office): president@mpssociety.org.au
Email (Committee of Management): committee@mpssociety.org.au
Website: www.mpssociety.org.au
AUSTRIA
Contact Name: Michaela Weigl
Position: Board President
Organisation: Gesellschaft für MukoPolySaccharidosen und ähnliche Erkrankungen
Address: Finklham 90
A – 4075 Breitenaich
AUSTRIA
Tel: 0043 7249 47795
Fax:
Email: office@mps-austria.at
Website: www.mps-austria.at
BELGIUM
Contact Name: Lut de Baere
Position: Board President
Organisation: BOKS Belgium
Address: Alice Nahonlaan 7
9120 Melsele
BELGIUM
Tel: 0498 70 15 03
Fax:
Email: info@boks.be; lut@boks.be; ludeba@skynet.be
Website: www.boks.be
BRAZIL
Contact Name: Regina Prospero
Position: President
Organization: Allianca Brasil de Mucopolissacaridoses
Address: Rua Conego Valadao, 1119, Sala 01.
Cep 07040.000 – Vila Augusta
Cidade – Guarulhos
UF – SP
Brazil
Tel: 55 11 2414.3060, 55 11 7878.8072
Email: regina@apmps.org.br, reginagprospero@yahoo.com.br
Website: www.aliancabrasilmps.org.br
BULGARIA
Contact Name: Desislava Pavlova Hristakeva-Atanasova
Position:
Organisation: Nasional Association of MPS Bulgaria
Address: National Association Of MPS Bulgaria
Str. Vladislav Ochkov No.47
8800 Sliven
Bulgaria
Tel: 00359 898 688 767
Email: dessy_pavel@mail.bg
CANADA
Contact Name: Jamie Myrah
Position: Executive Director
Organisation: The Canadian Society for Mucopolysaccharide & Related Diseases Inc. (The Canadian MPS Society)
Address: PO Box 30034
RPO Parkgate
North Vancouver, B.C.
V7H 2Y8
CANADA
Tel: (604) 924-5130 / 1-800-667-1846
Fax: (604) 924-5131
Email: jamie@mpssociety.ca
Website: www.mpssociety.ca
ESTONIA
Contact Name: Ande Martin
Position:
Organisation: MPS Society Estonia
Address: MPS Society (Estonia)
Nisu 25-9
Tallinn
10317
Estonia
Tel: 00372 5615 5362
Fax: 00372 656 8898
Email: andecorzetto@hotmail.com
Website:
FRANCE
Contact Name: Delphine Genevaz
Position: Deputy Director
Contact Name: Jean-Paul Lebarbenchon
Position: Board Member
Organisation: Vaincre les Maladies Lysosomales (VML)
Address: 2 ter avenue de France
91300 Massy
FRANCE
Tel: 01 69 75 40 30
Fax: 01 60 11 15 83
Email: communication@vml-asso.org; scientifique@vml-asso.org; jplebarbenchon@vml-asso.org
Website: www.vml-asso.org
GERMANY
Contact Name: Georg Schetter
Position: Chairman of the Board
Organisation: Stellvertretende Vorsitzende der Gesellschaft für MPS e.V.
Address: MPS Society (Germany)
Gesellschaft Fur MPS E.V.
Pappelweg 6
63741 Aschaffenburg
GERMANY
Tel: 0221-42367752
Fax: 06021-858 372
Email: georg.schetter@mps-ev.de
Website: www.mps-ev.de/index.php
HONG KONG
Contact Name: Stephen Ma On Tat
Position: Chairperson
Organisation: Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group
Address: G/F, Wang Lai House
Wang Tau Hom Estate
Kowloon
HONG KONG
Tel: 852 2794 3010
Fax: 852 2338 4820
Mobile: 9809-0973
Email: mps@hk-mps.com
Website: www.hk-mps.com
HUNGARY
Contact Name: Norbert Kato
Position:
Organisation: Magyar Mukopoliszaccharidózis Társaság (Hungarian Society for Mucopolysaccharide Diseases)
Address: MPS Society (Hungary)
Magyar Mukopoliszaccharidozis Tarsasag
Jokai U.5
Vac
2600
HUNGARY
Tel: 0036-20-472-9005
Fax:
Email: mps@mpstarsasag.hu
Website: www.mpstarsasag.hu
ITALY
Contact Name 1: Flavio Bertoglio
Contact Name 2: Federica Campana
Organisation: Associazione Italiana Mucopolisaccaridosi e Malattie Affini (AIMPS)
Address: Via A. Volta 291
20030 Senago – Milan
ITALY
Tel: +39 02 99010188
Fax: +39 02 99486016
Email: chairman@mpssociety.it; federica@aimps.it
Website: www.aimps.it
NETHERLANDS
Organisation: VKS
Address: Postbus 664
8000 AR
Zwolle
NETHERLANDS
Tel: 038 – 4201764
Fax: 038 – 4201447
Email: info@stofwisselingsziekten.nl
Website: www.stofwisselingsziekten.nl
NEW ZEALAND
Contact Name: Jenny Noble
Position: Secretary / Treasurer
Contact Name: John Forman
Position: Chairman
Organisation: Lysosomal Diseases New Zealand
Address (Jenny): 16 Woodleigh Place
Ohauiti
Tauranga
NEW ZEALAND
Tel (Jenny): 0064 7 544 8868 (John): 0064 4 566 7707
Fax (Jenny): 0064 7 544 8867 (John): 0064 4 566 7717
Email: jenny.noble@xtra.co.nz; john.forman@xtra.co.nz
Website: www.ldnz.org.nz
NORWAY
Contact Name: Kjersti Hagen
Position: Representative for parent group
Organisation: MPS Society (Norway)
Address: MPS foreldregruppen v/Kjersti Hagen
Vestsideveien 100
3647 HVITTINGFOSS
NORWAY
Tel (Mobile): 0047 90886375
Email: mpsnorge@gmail.com
POLAND
Contact Name: Teresa Matulka
Position: President
Contact Name: Meg (Malgorzata) Doroba
Position: Foreign Administrator
Organisation: Polish Society of Mucopolysaccharidosis (MPS) and Rare Diseases
Address: ul. Radnych 9A
05-503 Gloskow
POLAND
Tel: 0048 227 57 81 29
(Meg: 0048 607 78 47 10)
Fax: 0048 227 57 81 97
Mobile: 0048 605 36 88 40
Email: tmatulka@wp.pl; mkaflik@wp.pl; mailto:%20sekretariat@chorobyrzadkie.pl
Website: www.mps-society.pl
REPUBLIC OF IRELAND
Contact Name: David Hackett
Position:
Organisation: The Irish Society for Mucopolysaccharide Diseases
Address: MPS Society (Ireland)
20 Wrenville
Pipers Cross
Carrigaline
Co. Cork
REPUBLIC OF IRELAND
Tel: 00353 021 4377904
Email: mps@mpssociety.ie
Website: www.mpssociety.ie
SPAIN
Contact Name: Jordi Cruz
Position: President
Organisation: Asociación MPS España
Address: C/Anslem Clavé, 1
08787 La Pobla de Claramunt
Barcelona
SPAIN
Tel: 616 080 198 / 661 710 152
Fax: 93 808 71 14
Email: jordi.cruz@mpsesp.org
Website: www.mpsesp.org
SWEDEN
Contact Name: Veronica Hübinette
Position:
Organisation: Swedish MPS Society
Address: Solvik 3
471 61 Myggenäs
SWEDEN
Tel: 0046 736 845277
Fax: 0046 304 678101
Email: veronica_rasmus@hotmail.com
Website:
SWITZERLAND
Contact Name: Alfred (Fredi) Wiesbauer
Position: Board Member
Organisation: MPS Schweiz (MPS Society Switzerland)
Address: Knonauerstr. 29
CH 6330 Cham
SWITZERLAND
Tel: 0041 41 780 80 23
Fax: 0041 41 783 20 03
Mobile: 0041 79 315 66 35
Email: wiesbauer@swissonline.ch
Website: www.verein-mps.ch
TAIWAN
Contact Name: Virginia Tsai
Position:
Organisation: Taiwan MPS Society
Address: Taiwan MPS Society
7F, 16, Lane 102, Ho-Chiang Street.
Taipei 10478, Taiwan, R.O.C
Website: http://www.mpssociety.org.tw
TURKEY
Contact Name: Nalan Çetin
Position: Chairperson
Organisation: MPS Derneği
Address: Çamkıran 275/2 Sokak
No 22/21
Bornova – İzmir
Turkey
Tel: 00 90 232 3475311
Mobile: 01373 865117
Fax:
Email: mpsturk@gmail.com
Website: http://mpsturk.com
UK
Contact Name: Christine Lavery
Position: Chief Executive
Society: Society for Mucopolysaccharide Diseases
Address: MPS House
Repton Place
White Lion Road
Amersham
Buckinghamshire
HP7 9LP
UK
Tel: 0845 389 9901
Fax: 0845 389 9902
Email: mps@mpssociety.co.uk
Website: www.mpssociety.co.uk
USA
Contact Name: Barbara Wedehase MSW, CGC
Position: Executive Director
Organisation: National MPS Society
Address: 4220 Apex Highway
Suite 140
Durham
NC 27713
USA
Tel: 919 806 0101
Fax: 919 806 2055
Email: barbara@mpssociety.org
Website: www.mpssociety.org