Useful Links
Click on the links below to take you to various SPS Facebook group pages and relevant worldwide websites. If you have more links, please contact us at: admin@smssupportgroup.co.uk
Stiff Person Syndrome UK and Ireland Support Group and Charity official Facebook page and hosts of this website. Established in 2011, It is a private group with the primary aim of: "Support of those suffering from Stiff Person Syndrome (SPS), also known as Stiff Man Syndrome. Family and friends of sufferers are also welcome to the same support."
Set up in 2011, the private group SPS - Moersch & Woltman - Stiffman has the mission statement: "Support for the condition Stiff Person Syndrome." In addition, it is a group that will: "...help bring people living with Stiff Person Syndrome together in new ways."
A USA-based Facebook site called Stiff Person Syndrome Support Group set up in 2012, re-named Stiff Person Syndrome - SPS in 2019. It is an open public group set up to: "Raise awareness for a rare neurological disease called Stiff Person Syndrome (SPS). ALL posts are visible to all Facebook users regardless if you are a member of this group."
Stiff Person Syndrome Action Network is a private Facebook page established in 2014. It is: "A group of people with SPS united in taking the actions necessary to spread the word about this rare disease to the world. The purpose is to get the acknowledgment this disease deserves & to offer assistance to all sufferers who need it ... it's time for the silent suffering to end."
Stiff Person Syndrome Brasil is a private Facebook group set up in 2014 for South America's largest country. The condition's Portuguese name is Síndrome da Pessoa Rígida.
SPSA, the Stiff Person Syndrome Association, is a private group established in 2015 with the aim of: "Drama-free Stiff Person Syndrome support," and the message: "Be kind to each other, support each other and educate each other."
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SPS is BS (Beyond Suffering) is a private Facebook page based in the USA. Founded in 2015, it is "Dedicated to helping others, aiding with resources, furthering our non profit organization so that we may also provide financial help to others with Stiff Person Syndrome in horrendous situations. We want to help others experience joy, support, financial help and stability during their time with this disease."
Sindrome della persona rigida o di stiff-man (Italia) is one of the earliest Facebook groups. It's a public group and was set up in Italy in 2012.
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Stiff Person Syndrome Association (USA) is a private Facebook group created in 2011. It changed name to its current title in 2016. Its mantra is: "Support and education without drama or junk posts."
Stiff Person Syndrome Association (Jerking Stiff Person Syndrome) (USA) is a public Facebook group created in 2018 specifically for sufferers of one of the five main sub-divisions of SPS. Motto: "Together we can educate people AND doctors together!"
Living Our Best With SPS was originally set up in 2015 as SPSers/MWD`s Fighting On Through Exercise. Name changed March 2019. It is a USA-based private Facebook group. Mantra: "Our aim is to provide a noncompetitive positive motivating environment for people living with SPS.Providing inspiration and hope by fighting back through exercise."
SPS Plus PERM Syndrome. Official UK Support Group is a private Facebook group set up in the UK by Leigh Knowles in 2017. The name changed in 2018. Says Leigh: "I needed to
raise awareness and try to meet other people who have this horrible condition ... so I created this page in the hope it would help myself and others."
Our SPS and Rare Disease Blessings and
Struggles is a private USA Facebook group set up by Joy Dansby Charrier in 2014. Her goal and mission is: "... to help , whoever I can from a Christian perspective ... to share our triumphs and defeats, our happy times, our sad times, and share helpful, knowledgeable, information about this disease."
Stiff Person Syndrom Norge is a private group created in 2015 in Norway to "help each
other with good advice and help to understand this diagnosis. We have different experiences and may learn from each other."
Various Helpful and Informative Worldwide Websites
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
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
Selbsthilfegruppe Stiff-Person-Syndrom German-based website set up by Birgit Daiminger, similar in concept to the UK and Ireland SPS website, offering news, information and links for SPS sufferers in Deutschland
MedicineNet's 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
Stiff Baby Syndrome: MedicineNet's brief description of this even rarer version of SPS that affects babies. "A genetic disorder also known as hyperexplexia in which babies have an exaggerated startle reflex"
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. Click this link HERE to go to the SPS community forum
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
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
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
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.
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
Brain Talk is an online forum established in 1993 and affectionately known as "BT". It is a support community designed to promote education and awareness of various neurological conditions. This link is to the dedicated SPS section.
Wikipedia: Extensive information about SPS ranging from showing signs, symptoms, causes and diagnosis to treatment, prognosis, epidemiology and history