The Stiff Man Syndrome Charity web site uses the more widely used term "Stiff Person Syndrome" (SPS) throughout the site. The charity itself is named after the original name used by Moersch and Woltman who discovered the condition.
TheStiff Man Syndrome Charity website provides information on SPS, personal accounts and research findings.
Our audience includes people living with SPS; caregivers and their families; care professionals and researchers; SPS advocates; and the general public.
The Site "Stiff Person Syndrome, the Official UK and Irelend Support Group," (smssupportgroup.co.uk) provides general information about SPS, and does not take the place of professional medical advice, diagnosis or treatment. If you have noticed possible symptoms of SPS in yourself or someone else, please see a doctor.
Content on our site is written by the Charity members.
We do not accept or host paid advertising on the Charity's site, www.smssupportgroup.co.uk. The Charity and its website is supported by the generosity of our donors.
The Stiff Man Syndrome Charity retains copyright on the content of this site, unless otherwise noted.
Reprint or reuse of information from this site without change
To request permission to use information from this website, send an email describing intended use, duration and contact information to firstname.lastname@example.org
Translations and adaptationsTranslations or adaptations of Stiff Man Syndrome Charity content must be reviewed and approved by the Stiff Man Syndrome Charity committee. Please send an email describing intended use, duration and contact information to email@example.com
Using content from Association press releasesReprint of Stiff Man Syndrome Charity content or references to Stiff Man Syndrome Charity contact information in an organization’s press release must be approved by the secretary of the charity. Please send queries to Liz.Blows@smssupportgroup.co.uk
Using any of the logos without the charity’s prior consent is strictly prohibited. Please send written requests describing intended use, duration and contact information to firstname.lastname@example.org.
Photographs and graphics
The Stiff man syndrome Charity works to ensure that the information provided on its official website is accurate, timely and useful. However, the information contained on the Stiff man syndrome Charity website should not be considered medical guidance or professional advice. The Stiff man syndrome Charity, its affiliates or agents, or any other parties involved in the preparation or publication of this site are not responsible for errors or omissions in information provided on this site or any actions resulting from the use of such information. Visitors are encouraged to confirm the information contained herein with other reliable sources and to direct any questions concerning their personal health to appropriate health care professionals. Corrections and additions to this site will be made when necessary or as time permits.
The Stiff man syndrome Charity is committed to protecting your privacy when you visit our website. Information we collect from you is used to improve our site, provide you a better experience, respond to your questions and process your online donations.
We collect two types of information on our website:
Web server traffic information. This information is used to determine the number of visitors to our site, length of stay and sources of traffic. We collect aggregate data — or totals of those visiting from a domain — not information identifying individual users. We use this information to help improve our site and our service to you.
Personal information provided by you. We collect email addresses and other personal information only when you provide it to us. If you fill out a form or survey, request information or make a donation, we may collect your name, address, city, county, post code, telephone number and email address.
Use of personal information
The Stiff man syndrome Charity collects information on our website. We do not sell, trade or rent our website visitor’s personal information to others other than those outlined in this section. If you willingly provide us your personal information, the Stiff man syndrome Charity may use it in the following ways:
Donations. When you make an online donation to us, it’s possible your name may be on some mailing lists shared with other reputable organizations. As a donor, you may request to have your name removed from these mailing lists. See the Your Choice section below to learn how.
Email Information Requests and Questions. When we respond to your email requests or questions, we may collect your email address and send youStiff man syndrome Charity email bulletins or news. To opt out and remove your name from future emails of this type, follow the unsubscribe instructions in the message.
E-News: When you sign up to receiveStiff man syndrome Charity e-news, we collect your email address and may also notify you about other information we think you will find valuable. To opt out and remove your name from future emails of this type, follow the unsubscribe instructions in the message.
Event Registration. The charity provides online registration for our major events, such as the education and research conferences.. We may collect your email address and send you Stiff man syndrome Charity email bulletins or news. To opt out and remove your name from future emails of this type, follow the unsubscribe instructions in the message.
Forum. Please remember that any information you disclose on the Forum becomes public information.
By using theStiff man syndrome Charity website, you consent to the collection and use of the information described above. Any changes to this policy will be posted prior to their implementation.
We respect your privacy and recognize that you may wish to limit the ways in which we contact you. Simply send an email to email@example.com with the following information:
To remove your name from mailing lists shared with other organizations, please provide your full name, mailing address and a sentence requesting removal.
To remove your name from the Stiff man syndrome Charity's postal mailing list, please provide your full name, mailing address and a sentence requesting suppression of your personal information in our files.
To review or correct your personal information with the Stiff man syndrome Charity, please provide your name and a sentence requesting a review or a correction.
We take every precaution to protect your personal information. At the Stiff man syndrome Charity, your personal information is kept confidential and stored in a secure environment. Access to your information is restricted only to authorized staff with a legitimate and specific business purpose. For example, our finance employees need access to information to process online donations. If you have any questions about the security at our website, send an e-mail to firstname.lastname@example.org.
A cookie is a piece of data sent to your Web browser and stored on your hard drive. Cookies help us improve our website by tracking and targeting the interests of our users as they visit different sections of our site. Cookies do not contain any personal information.
We use IP addresses to analyze trends, administer the site, track visitors’ movements and gather broad information for aggregate use. IP addresses are not linked to personal information.