Alianza Iberoamericana de Enfermedades Poco Frecuentes – ALIBER (Mexico)
Guadalajara
Mexico
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Canadian Organization for Rare Disorders (CORD)
151 Bloor St. W., Suite 600
Toronto, Ontario, M5S 1S4
Canada
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Phone: (416) 969-7464 / 1-877-302-7273

Chinese Organization for Rare Disorders (CORD)
Beijing
China
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Phone: 85 10 8354 57 11

Children Living with Inherited Metabolic Diseases (CLIMB)
Climb Building 176 Nantwich Road
Crewe, CW2 6BG
United Kingdom
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Phone: 4408452412173

European Organization for Rare Diseases (EURORDIS)
96 Rue Didot
Paris, 75014,
France
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Phone: +33 1 56.53.52.10

Everylife Foundation for Rare Diseases
77 Digital Drive, Suite 210
Novato, CA 94949
USA
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Phone: 415.884.0223

Genetic Alliance
4301 Connecticut Ave NW, Suite 404,
Washington DC 20008-2369
USA
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Phone: 202.966-5557

Genetic Alliance UK
4D Leroy House 436 Essex Road
London N1 3QP
United Kingdom
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Phone: 020 7704 3141

Global Genes
28 Argonaut, Suite 150
Aliso Viejo, CA 92656
USA
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Phone: 949-248-RARE (7273)

Indian Organization of Rare Diseases (India)
Plot 397, #22b Jubilee Hills,
Hyderabad 500033, India
US Office:
699 Apache Lane,
St. Paul, MN 55120
USA
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International Alliance of Patient Organizations
49-51 East Road,
London N1 6AH,
United Kingdom
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Phone: +44 20 7250 8280

Japan Patients Association
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Phone: 03-6280-7734

Korean Organization for Rare Diseases
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Phone: 02.714.5522

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue,
Danbury, CT 06810
USA
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Phone: 203-744-0100

New Zealand Organisation for Rare Disorders (NZORD)
Post: PO Box 38-538, Wellington Mail Centre,
Petone 5045
New Zealand
Street: 228 Tinakori Rd,
Thorndon, Wellington 6011
New Zealand
Phone: +64 4 471 2226
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Orphanet /INSERM U S 14
Rare Disease Platform 96, rue Didot,
Paris, 75014
France
Phone: +33 (0)1.56.53.81.37

Rare Disease Foundation (Canada)
4500 Oak Street, Room C234,
Vancouver, BC, V6H 3N1
Canada
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Phone: 866-348-6677

Rare Disease Society of South Africa
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Phone: 072 476 7552

Rare Disease United Foundation (RDUF)
P.O. Box 16294 Rumford,
RI 02916
USA
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Phone: 401.434.0052

Rare Disease UK
Unit 4D, Leroy House, 436 Essex Road, N1 3QP, UK.
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Phone: 020 7704 3141

Rare Voices Australia
3 The Postern, Castlecrag, Suite 2
New South Wales, 2068
Australia
Postal: PO Box 4419, Castlecrag
New South Wales, 2068
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Phone: +61 2 9967 5884

Syndromes Without A Name (SWAN)
1745 Lorna Ln, Otsego
MI 49078
USA
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Phone: (269) 692-2090

Syndromes Without a Name UK (SWAN UK)
4d Leroy House. 436 Essex Road
London, N1 3QP
United Kingdom
Phone: 020 7704 3141

Taiwan Foundation for Rare Diseases (TFRD)
6F., No.20, Changchun Rd.
Taipei City, 104 Taiwan
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Phone: 225210717

Government Agencies

FDA Office of Orphan Products Development (OOPD)
10903 New Hampshire Avenue Silver Spring, MD 20993
Phone: 1-888-INFO-FDA (1-888-463-6332)

National Institutes of Health (NIH) Genetic and Rare Diseases (GARD) Information Center
PO Box 8126, Gaithersburg
MD 20898-8126
Phone: 1-888-205-2311

NIH Rare Disease Programs