Genetic and Rare Diseases Information Center (GARD)


Other names people use for this condition
  • Familial antiphospholipid syndrome
  • Antiphospholipid antibody syndrome
  • Lupus anticoagulant, familial
  • APS
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Antiphospholipid syndrome
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Antiphospholipid syndrome is an autoimmune disorder. It is characterized by high levels of multiple different antibodies that are associated with clots in the arteries and veins. Symptoms vary and can include blood clots, miscarriage, rash, chronic headaches, dementia, and seizures. Treatment involves thinning the blood to reduce clotting.[1]

References
  1. NINDS Antiphospholipid Syndrome Information Page . National Institute of Neurological Disorders and Stroke. 2008 Available at: http://www.ninds.nih.gov/disorders/antiphosphlipid/antiphospholipid.htm. Accessed February 13, 2009.

Questions & Answers (Found 3 Questions)
A list of questions from the public on rare and/or genetic diseases that have been answered by the Genetic and Rare Disease Information Center. Click on each question to find the answer.
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For more information about Antiphospholipid syndrome click on the boxes below:
More Detailed Information NLM Gateway Support Groups Clinical Trials & Research
 
More Detailed Information (Found 11 resources)
Links where you can find more general information, comprehensive resources, selected full text journal articles, and news updates

  • General

    • eMedicine provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free
    • The Lupus Foundation of America has an information page on lupus and antiphospholipid antibodies. Click on Lupus Foundation of America to view the information page.
    • The March of Dimes has an information page on thrombophilia and pregnancy. Click on March of Dimes to view the information page.
    • The MayoClinic.com has a information page on antiphospholipid syndrome. Click on MayoClinic.com to view the information page.
    • MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
    • The National Human Genome Research Institute's (NHGRI) mission encompasses a broad range of studies aimed at understanding the structure and function of the human genome and its role in health and disease. Click on the link to view the information page on this topic.
    • The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information on this topic.
    • The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Antiphospholipid syndrome. Click on the link to go to OMIM and review these resources.
    • Orphanet is a database dedicated to information on rare diseases and orphan drugs.  Access to this database is free of charge.  Click on the link to read information on this topic.
    • PubMed is a searchable database of medical literature and lists journal articles that discuss Antiphospholipid syndrome. Click on the link to view a sample search on this topic.
    • UpToDate for patients has an information page on antiphospholipid syndrome. Click on UpToDate to view the information page.
 
NLM Gateway (Found 1 resource)
A tool to search across multiple resources offered on the National Library of Medicine's Website

    • NLM Gateway allows users to search many resources offered on the National Library of Medicine's Web site at once to quickly find more information about this condition. Some of the resources may be a duplicate of the resources listed on this page. To search NLM Gateway, click on the link; the condition name will already be in the search box, so you can just click the “Search” button.
 Umbrella Organizations | Disease-Specific Organizations | Live Chat/E-mail Lists | Parent Matching Organizations
Support Groups (Found 12 resources)
Groups providing a wide range of services, supportive resources, and information

  • Umbrella Organizations

  • Disease-Specific Organizations

    • APS Foundation of America, Inc.
      P. O. Box 801
      LaCrosse, WI 54602-0801
      On-line e-mail form: http://www.apsfa.org/contact.htm  
      Web site: http://www.apsfa.org/
    • The Hughes Syndrome Foundation
      Louise Coote Lupus Unit
      Gassiot House
      St Thomas' Hospital London
      SE1 7EH
      Phone: 020 7188 8217
      E-mail: hsf@btconnect.com
      Web site: http://www.hughes-syndrome.org/
    • Vascular Disease Foundation
      1075 S. Yukon, Suite 320
      Lakewood, Colorado 80226
      Toll-Free Number: 888-VDF-4INFO
      Phone: 303-989-0500
      Fax: 303-989-0200
      E-mail: info@vdf.org  
      Web site: http://www.vdf.org
    • Lupus Foundation of America
      2000 L Street, N.W.
      Suite 710
      Washington, DC 20036
      Toll-free: 1-800-558-0121 (English)
      Toll-free: 1-800-558-0231 (en español)
      Phone: 202-349-1155
      Fax: 202-349-1156
      Web site: http://www.lupus.org/
    • American Autoimmune Related Diseases Association
      22100 Gratiot Avenue
      Eastpointe
      East Detroit, MI   48201-2227
      Toll free:  800-598-4668
      Telephone: 586-776-3900
      Fax: 586-776-3903
      E-mail:  aarda@aarda.org
      Web site:  http://www.aarda.org
    • Autoimmune Information Network, Inc.
      P.O. Box 4121
      Brick, NJ 08723
      Telephone: 732-262-0450
      Web site: http://www.aininc.org
    • The National Alliance for Thrombosis and Thrombophilia
      PO Box 66018
      Washington DC 20035-6018
      Phone: 914-220-5040
      Toll-free: 877-466-2568
      E-mail: info@nattinfo.org
      Web site: http://www.nattinfo.org/
  • Live Chat/E-mail Lists

    • The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
    • RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
  • Parent Matching Organizations

 
Clinical Trials & Research (Found 2 resources)
Resources where you may find research studies and clinical trials

    • ClinicalTrials.gov lists trials that are studying or have studied Antiphospholipid syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
    • The Rare Thrombotic Diseases Consortium is one of ten consortia of the Rare Diseases Clinical Research Network (RDCRN), a Network established by the National Institutes of Health (NIH). Click on the link above to learn more about the consortium. 

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