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Genetic and Rare Diseases Information Center (GARD)

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Fucosidosis type 1

Other Names for this Disease
  • Infantile fucosidosis
  • Macrocephaly, brachycephaly, depressed nasal bridge, hypertelorism, thick eyebrows/scalp hair, short stature/neck, seizures, progressive dementia
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Organizations Supporting this Disease

  • Canadian Society for Mucopolysaccharide and Related Diseases Inc. (Canadian MPS Society)
    P.O. Box 30034, RPO Parkgate
    North Vancouver, BC V7H 2Y8
    Toll-free: 800-667-1846
    Telephone: 604-924-5130
    Fax: 604-924-5131

  • National MPS Society
    4220 NC Hwy 55, Ste.140
    Durham, NC 27713
    Toll-free: 877-MPS-1001
    Telephone: 919-806-0101
    Fax: 919-806-2055

  • Society for Mucopolysaccharide (MPS) Diseases
    MPS House Repton Place White Lion Road
    Amersham Buckinghamshire
    HP7 9LP
    United Kingdom
    Telephone: (+44) 0845 389 9901

  • The International Advocates for Glycoprotein Storage Diseases (ISMRD)
    3921 Country Club Drive
    Lakewood, CA 90712

Social Networking Websites

  • is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
  • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Organizations Providing General Support