Patient Organizations

Expression of Hope II: Inspiration through Art is brought to you by Genzyme in collaboration with patient organizations and societies from around the world. Genzyme is proud to be affiliated with these fine organizations and salutes the important work they do.

Because many lysosomal storage disorders are so rare, patients may often feel alone in their diagnosis. There are many organizations and societies that help bring patients together with others who have shared their experiences. In addition, they can provide educational and practical information and advocate on behalf of patients.

Genzyme Corporation does not review or control the content of non-Genzyme websites, and this hyperlink does not constitute an endorsement by Genzyme of the site’s content. Genzyme’s privacy procedures do not apply to the owners of a non-Genzyme website. These links are for informational purposes only.

Acid Maltase Deficiency Association
P.O. Box 700248
San Antonio, Texas 78270-0248
TEL: 210-494-6144 
www.amda-pompe.org

AMPS-PE - Associação Pernambucana de Mucopolissacaridoses - Breno Bloise de Freitas
Rua das Dálias, 180 Rio Doce - Olinda - PE - CEP: 53150-430
(81) 9106.3226
(81) 9106.1494
amps-pe@uol.com.br

Asociación Colombiana de Pacientes con Enfermedades de Depósito Lisosomal, ACOPEL
Calle 142 No. 25-92 Int. 12 B
Bogota D.C. Colombia
TEL: 57-1-274-26-95
www.gaucher.org.co

Associação Brasileira de Pacientes Portadores da Doença de Fabry e Familiares, ABRAFF
Rua Irene Palma, 212 - Ch. São José
Campinas, SP, Brasil 13054-060
TEL: +55 (19) 3224-4210 e (19) 8148-6643
www.fabry.org.br

Associação Brasileira dos Portadores da Doença de Gaucher
Av. Nossa Senhora de Copacabana, 500 sala 1112
Rio de Janeiro, RJ, Brasil, 22020-001
TEL/ FAX: +55 (21) 2247-9323 e (21)88766878
www.gaucherbrasil.org.br

ASSOCIAÇÃO PAULISTA DOS AMIGOS FAMILIARES E PORTADORES DE MUCOPOLISSACARIDOSES
RUA CONEGO VALADÃO, 1119 - SALA 04 - V. AUGUSTA - GUARULHOS/SP
(11)2414.3060 - 8754.9853 - 6462.0033
www.apmps.org.br/

Associação Paulista dos Portadores da Doença de Gaucher, APPDG
Rua Paes de Araújo, 178 - Itaim Bibi
São Paulo, SP, Brasil, 04531-090
TEL: 11-3078-7044
www.appdgaucher.org.br/

Australian MPS Society
PO Box 623, HORNSBY NSW 1630
Australia
TEL: 61-02-9476-8411
www.mpssociety.org.au

Australian Pompe Association
4/55 Van Ness Avenue Mornington Vic 3931
Australia
TEL: 03-59759114
www.pompedownunder.org

Canadian Society for Mucopolysaccharide (MPS) and Related Diseases
PO Box 30034, RPO Parkgate
North Vancouver, BC
V7H 2Y8, Canada
TEL: 604-924-5130
www.mpssociety.ca

Fabry Society of Canada
9011-142 Street
Edmonton Alberta
Canada T5R 0M6
koning@compusmart.ab.ca
(780) 489-0012

Fabry Suisse
Willikon 58 Oetwill am See
CH-8618, Switzerland
TEL: 0041-19290574
www.fabrysuisse.ch

Fabry Support and Information Group
108 NE 2nd Street, Suite C
Concordia, MO 64020 USA
TEL: 660-463-1355
www.fabry.org

Genetic Alliance
4301 Connecticut Ave. NW, Suite 404
Washington, DC, 20008-2369 USA
TEL: 202-966-5557
www.geneticalliance.org

Gesellschaft für Mukopolysaccharidosen
Rupert Mayer Straße 13
Aschaffenburg, 63741 Germany
TEL: 0-60-21-85-83-73
www.mps-ev.de/index.php

Hide and Seek Foundation
P.O. Box 3202
Granada Hills, CA 91394
TEL: 818-832-5475
Info@hideandseek.org
www.hideandseek.org

International Pompe Association
Luitenant Generaal van heutszlaan 6
3743 JN BAARN
THE NETHERLANDS
TEL: 00-31-35-5480461
www.worldpompe.com/

Korean Organization of Rare Diseases (KORD)
#505, Keumsung Bldg,158-50, Jegi 2 Dong, Dongtaemun Ku
Seoul 130-861 Korea
TEL: 82-2-714-5522
www.kord.or.kr

National Fabry Disease Foundation
4301 Connecticut Ave NW
Suite 404
Washington DC 20008
TEL: 800-651-9131
www.thenfdf.org

National Gaucher Foundation
11140 Rockville Pike, Suite 101
Rockville, MD
20852-3106 USA
TEL: 800-925-8885
www.gaucherdisease.org

National Gaucher Foundation of Canada
4100 Yonge Street, Suite 310
North York, ON, M2P 2B5 Canada
TEL: 416-250-2850
www.gaucher.org

National MPS Society
4220 NC Hwy 55, Ste 140
Durham, NC 27713
TEL: 207-947-1445
www.mpssociety.org

National Niemann-Pick Disease Foundation
415 Madison Ave
Ft. Atkinson, WI, 53538 USA
TEL: 877-287-3672
www.nnpdf.org

National Organization of Rare Disorders (NORD)
55 Kenosia Ave
Danbury CT, 06813-1968
TEL: 203-744-0100
www.rarediseases.org/

Sophia’s Garden Foundation
520 El Capitan Place
Palo Alto, CA 94306
info@sophiasgarden.org
www.sophiasgarden.org

National Tay-Sachs and Allied Diseases
2001 Beacon Street, Suite 204
Brighton, MA 02135 USA
TEL: 800-906-8723
www.ntsad.org

THE PROJECT
The Children's Rare Disease Network
24338 EL TORO RD., SUITE E507 • LAGUNA WOODS, CA 92637
O: 949.305.8656
www.theprojectcharity.org

Taiwan Foundation for Rare Disorders (TFRD)
10F, No. 52, Sec. 2, Jungshan N. Rd.
Taipei City, Taiwan, ROC
TEL: 886-2-2521-0717
www.tfrd.org.tw

United Pompe Foundation
5100 N. Sixth Street #149
Fresno, CA 93710
TEL: 559.227.1898
www.unitedpompe.com

Vereniging Spierziekten Nederland, VSN
Lt. Gen. Van Heutslaan 6
Baarn 3743 JN, Netherlands
TEL: 0031-(0)35-548-0461
www.vsn.nl