Resources
Canadian Organization for Rare Disorders (CORD)
151 Bloor St. W., Suite 600, Toronto, Ontario, M5S 1S4, Canada
Phone: (416) 969-7464 / 1-877-302-7273
Children Living with Inherited Metabolic Diseases (CLIMB)
Climb Building, 176 Nantwich Road, Crewe, CW2 6BG, United Kingdom
Phone: 44 08452412173
European Organization for Rare Diseases (EURORDIS)
96 Rue Didot, Paris, 75014, France
Phone: +33 1 56.53.52.10
Everylife Foundation for Rare Diseases
77 Digital Drive, Suite 210, Novato, CA 94949, USA
Phone: 415.884.0223
Genetic Alliance
4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369, USA
Phone: 202.966-5557
Genetic Alliance UK
4D Leroy House, 436 Essex Road, London N1 3QP, United Kingdom
Phone: 020 7704 3141
Indian Organization of Rare Diseases (India)
Plot 397, #22b Jubilee Hills, Hyderabad 500033, India. US Office: 699 Apache Lane, St. Paul, MN 55120, USA
International Alliance of Patient Organizations
49-51 East Road, London N1 6AH, United Kingdom
Phone: +44 20 7250 8280
National Organization for Rare Disorders (NORD)
55 Kenosia Avenue, Danbury, CT 06810, USA
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
Orphanet / INSERM US 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
Phone: 866-348-6677
Rare Voices Australia
3 The Postern, Castlecrag, Suite 2, New South Wales, 2068, Australia. Postal: PO Box 4419, Castlecrag, New South Wales, 2068
Phone: +61 2 9967 5884
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
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
