Contact Us

AUSTRALIA

Contact Name: Vanessa Ede-Scott
Position: Honorary President

Organisation: Mucopolysaccharide & Related Diseases Society

Address (National Office):
MPS Society National Office
PO Box 131 
Heidelberg
Victoria 3084  AUSTRALIA

Tel (National Office): 1800 045 515  
Email (National Office): president@mpssociety.org.au
Email (Committee of Management): info@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 - 4612 Scharten
AUSTRIA

Tel: 0043 7249 47795
Fax: 0043 7249 47795
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: 00 32 (0)498 70 15 03
Fax: 0032 (0) 3775 4839
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 Palombi Vitalina 37

Vila Augusta - Guarulhos /SP

Cep 07040-230

BRAZIL

Tel: +55 (11) 2414-3060

Email: regina@apmps.org.br; reginagprospero@gmail.com

Website: www.aliancabrasilmps.org.br


 

BULGARIA

 

 

CANADA

Contact Name: Jill Ley
Position: Interim Manager

Organisation: The Canadian Society for Mucopolysaccharide & Related Diseases Inc. (The Canadian MPS Society)

Address:
218 - 2055 Commercial Drive
Vancouver
British Columbia
V5N 0C7
CANADA

Tel: (604) 924-5130 / 1-800-667-1846

Email: manager@mpssociety.ca  
Website: www.mpssociety.ca

 

CZECH REPUBLIC

Contact Name: Jan Michalik

Position: Chairman

Organisation: Spolecnost Pro Mukopolysacharidosu

Address:

Chaloupky 35

Olomouc 77200

CZECH REPUBLIC

Tel: 00420 585 315 787

Email: spmps@seznam.cz

Website: www.mukopoly.cz

 

DENMARK

Contact Name: Gitte Sorensen / Roan Sorensen

Position: Chairman / Treasurer

Organisation: Association for Mukopolysaccaridose

Address:

Viggo Jarls Vei 17

DK-2830 Virum

DENMARK

Tel: +45 4186 5582 / +45 5122 2214

Email:info@mpsdanmark.dk / roan.sorensen@gmail.com / gitte.webmail@gmail.com

 

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: Gesellschaft für Mucopolysaccharidosen e.V.

Address:
Herstallstrasse 35
63739 Aschaffenburg
GERMANY

Tel: +49 (0) 6021 85 83 73
Fax: +49 (0) 6021 85 83 72
Email: georg.schetter@mps-ev.de
Website: www.mps-ev.de

 

HONG KONG

Contact Name: Stephen Ma On Tat
Position: Vice 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: 852 9809 0973
Email: hongkongmpsgroup@gmail.com 
Website: www.mps.org.hk

Facebook.com/mpshk

 

HUNGARY

Contact Name: Norbert Kato
Position:

Organisation: Magyar Mukopoliszaccharidózis Társaság (Hungarian Society for Mucopolysaccharide Diseases)

Address:
Magyar Mukopoliszaccharidozis Tarsasag
Jokai U.5  Vac 2600
HUNGARY

Tel: 0036-20-472-9005 / 0036 30 260 2187
Fax:
Email: mps@mpstarsasag.hu / norbert.kato@gmail.com

Website: www.mpstarsasag.hu

 

INDIA

Contact Name: Manjit Singh

Position: Honorary President

Organisation: Lysosomal Storage Disorders Support Society

Address:

Dept. of Genetic Medicine, Sir Gangaram Hospital

Old Rajender Nagar

New Delhi - 110065

INDIA

Tel: +91 98 10022645

Fax: +91 11 26829063

Email: manjitsingh@lsdss.org

Website: www.lsdss.org

 

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

 

JAPAN

Contact Name

Position

Organisation: The Japanese Society of the Patients and the Families with Mucopolysaccharidoses

Address

 

Tel

Fax

Email

Website: www.mps-japan.org

 

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: Field Officer / Administrator

Contact Name: John Forman
Position: Chairman

Organisation: Lysosomal Diseases New Zealand

Address (Jenny):
167 Hollister Lane 
Ohauiti
Tauranga 3112
NEW ZEALAND

Tel (Jenny): 0064 7 544 8868 (John): 0064 4 566 7707
Email: jenny.noble@xtra.co.nz; john.forman@xtra.co.nz
Website: www.ldnz.org.nz

 

NORWAY

Contact Name: Oivind Juiris Kanavin
Position: FRAMBU MPS parent group

Organisation: MPS foreldregruppen for MPS sykdommene

Address:
MPS foreldregruppen for MPS sykdommene 
Sandbakkveien 18
1404 Siggerud
NORWAY

Tel: +47 64 85 60 00
Email: info@frambu.no; oka@frambu.no

 

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;biuro@chorobyrzadkie.pl

Website: www.mps-society.pl

 

REPUBLIC OF IRELAND

Contact Name: Martin Lynch
Position: Chairperson

Organisation: The Irish Society for Mucopolysaccharide Diseases

Address:
Ballymacreese
Ballyneety
Co. Limerick
REPUBLIC OF IRELAND

Tel: 00353 087 2273297

Email: irishmpssociety@gmail.com
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: Founder and President

Organisation: Taiwan MPS Society
 
Address:
Taiwan MPS Society
7F, 16, Lane 102, Ho-Chiang Street.
Taipei 10478, Taiwan, R.O.C

Tel: 886 25032125

Fax: 886 25039435

Mobile: 886 988 102095 / 886 910925279

Email: ttmps@ms32.hinet.net; tsaivirginia@yahoo.com.tw

Website: http://www.mpssociety.org.tw

 

TURKEY

Contact Name: Muteber Eroglu
Position: Chairperson

Organisation: MPS LH Derneği

Address:
Hakimiyeti Millive cad.
No. 58 Vedat Kadri Kancal is merkezi 46/A
Uskudar / Istanbul
TURKEY

Tel: 00 90 232 7552084
Mobile: 00 90 532 293 05 68
Email: mpsturk@gmail.com
Website: http://mpsturk.org

 

UNITED KINGDOM

Contact Name: Christine Lavery
Position:
 Group Chief Executive  

Society: Society for Mucopolysaccharide Diseases

Address:
MPS House
Repton Place
White Lion Road
Amersham
Buckinghamshire
HP7 9LP
UK

Tel: 0345 389 9901
Fax: 0345 389 9902

Email: mps@mpssociety.org.uk
Website: www.mpssociety.org.uk

 

USA

Contact Name: Mark Dant 
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: mark@mpssociety.org
Website: www.mpssociety.org

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