Antiphospholipid Syndrome Resources
- One of the best overviews of APS I’ve seen is by NINDS (the National Institute of Neurological Disorders and Stroke) part of the National Institutes for Health.
- Another is: Genome.gov: The National Human Genome Research Institute (also part of NIH) “Learning about Antiphospholipid Syndrome.”
- APS Foundation of America, Inc. [apsfa.org]
A central location in the United States for Antiphospholipid Antibody Syndrome, its related diseases and general thrombophilia information.
- Hughes Syndrome Foundation. Antiphospholipid Syndrome (known as Hughes Syndrome in the UK) was first identified by London rheumatologist Dr.Graham Hughes. This site has wide range of information for patients, researchers, and physicians, including current research.
Additional Resources for APS
- Lupus Foundation of America, Inc.: Antiphospholipid Antibodies [lupus.org] Antiphospholipid Syndrome is often found in conjunction with Lupus. This site provides information on antiphospholipid antibodies and APS.
- The National Alliance for Thrombosis and Thrombophilia [nattinfo.org]
A nationwide, community-based, volunteer health organization committed to preventing and treating the array of major health problems caused by blood clots.
- Antiphospholipid syndrome [rarediseases.info]
Information from the Genetics and Rare Diseases Information Center.
- Finding Reliable Health Information Online
A listing of information and links for finding comprehensive genetics health information online.
APS On-Line Support Groups
- APS Foundation of America On-Line Friends and Support Forum A private forum for people who have APS, friends, family, and caregivers.
- APSLUK: An Antiphospholipid Antibody Support Group (A Yahoo Group). Based in the UK (where APS or Hughes Syndrome was first identified), but with members from many countries, this very active group offers support, help, understanding and information about antiphospholipid syndrome.
- APS-Syndrome (A Yahoo Group). A group intended for patients, caregivers, and physicians to foster discussions and share experiences related to APS.
- Daily Strength Antiphospholipid Syndrome Support Group
Social Networking for APS Patients, Families and Caregivers
- Facebook: APS Foundation of America Facebook Page
- Facebook: Hughes Syndrome Foundation
- Facebook: London’s Hospital for Special Surgery
- My Space: APS Foundation of America My Space Page
- Twitter: APS Foundation of America Twitter Page
- Professor Anisur Rahman of University College, London, discusses the latest thinking on Antiphospholipid Syndrome, its causes and treatments in a 35-minute lecture delivered October 10, 2012, at the Royal Society of Medicine.
- What is Hughes Syndrome? An excellent eight-minute You-Tube overview of APS–also known as Hughes Syndrome–by Dr. Graham Hughes, the London rheumatologist who first identified APS.