Various Helpful and Informative Worldwide Websites
Click the logo on the left to go to each site. See below for non-English articles
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The Tin Man is an extensive website dedicated to Stiff Person Syndrome, covering everything from a detailted description of the condition, through to links for professionals, diagnoses, treatments, patient stories and videos, plus social media.
SPS is a USA-based website. The purpose of this website is to provide support for people with Stiff Person Syndrome (SPS). Medical Director is Dr. Duarte G. Machado, Co-Director of Hartford Healthcare Movement Disorders Center and Clinical Assistant Professor of Neurology, Yale University School of Medicine.
The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities. It has more than two million registered users. This link is direct to the section on SPS where sufferers post about their lives and experiencess.
The Stiff Person Syndrome Research Foundation is a dedicated US website set up by Dr Tara Zier aimed at fundraising to promote research into the condition.The mission statement is: "To support research to develop better treatments and to make a cure possible for Stiff Person Syndrome for each and every patient."
Wikipedia: Extensive information about SPS ranging from showing signs, symptoms, causes and diagnosis to treatment, prognosis, epidemiology and history.
NORD, the National Organisation for Rare Disorders based in the USA. The link (left) goes direct to their comprehensive and detailed section about SPS in all its main forms.
USA government site, usagov, that brings together SPS and SPS-related records and websites. This link (icon left) takes you directly to the site section about Stiff Person Syndrome and, in the first 30 pages, 600 links (but not all SPS). Many links are the same detailed on our website, but it is also searchable for specific conditions/treatments by typing in requests.
MedicineNet is an online, healthcare media publishing company, founded in the USA in 1996. This link is to a description of SPS and includes a variety of subscriber/sufferer responses.
This is the official journal of the American Academy of Neurology. The link takes you to their website, preset for searching 300+ results for Stiff Person Syndrome.
NICE is the UK's National Health Service (NHS) National Institute for Health and Care Excellence. This link takes you direct to NICE's website.
Established in France in 1997, this portal for rare diseases and orphan drugs provides high quality information on rare diseases and ensures equal access to knowledge for all stakeholders. Orphanet represents a consortium of 40 countries across the globe.
Launched in May 1995, Medscape provides access to medical information for clinicians. It also also provides continuing education for physicians and health professionals and references medical journal articles.
Easy-to-use platform where rare disease patients, families and patient organisations can develop global online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups, allowing people to connect around issues that affect them while living with a rare disease.
The voice of rare disease patients in Europe, Eurordis represents 812 rare disease patient organisations in 70 countries and 30 million people affected by rare diseases. The purpose of the website is to provide information for rare disease patient organisations, patients, their families, carers and any other organisations or individuals concerned with rare diseases. You have to register to access the site. Available in eight languages.
GARD is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases.
Yale School of Medicine is a renowned USA university centre with more than 1,500 specialists.
Cleveland Clinic is a USA-based centre for medical excellence established for more than 100 years with multiple locations across the country.
John Hopkins University is a Maryland, USA-based hospital with the mantra: "To improve the health of the community and the world by setting the standard of excellence in medical education, research and clinical care."
Healthline is a research organisation with a database of more than 20,000 articles, including SPS. They pride themselves on: "quality, research, and transparency we put into every article".
UCL (University College London) Institute of Neurology is a global leader in neuroscience. Part of the Faculty of Brain Sciences, "we are at the forefront of the mission to translate neuroscience discovery into diagnostics and treatments for patients with neurological diseases".
NIH or NINDS is a USA-based organisation with the mantra: "The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease."
OMIM®, Online Mendelian Inheritance in Man® is a comprehensive compendium of human genes and genetic phenotypes freely available and updated daily. The database began in the early 1960s by Dr. Victor A. McKusick.
Stiff-Person Vereinigung Deutschland e.V is a German website dedicted to spreading awareness of SPS.