Introduction

The Stiff Man Syndrome charity website uses the more widely used term "Stiff Person Syndrome" (SPS) throughout the site. The charity itself is named after the original title used by Moersch and Woltman, who discovered the condition.

The Stiff 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.

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.

Permission to use material from this website / reprints / copyright

The Stiff Person 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 admin@smssupportgroup.co.uk

Translations and adaptations

Translations or adaptations of Stiff Person Syndrome charity content must be reviewed and approved by the Stiff Person Syndrome charity committee. Please send an email describing intended use, duration and contact information to admin@smssupportgroup.co.uk

Using content for press releases or any other published material

Reprint of Stiff Person Syndrome charity content or references to Stiff Person Syndrome charity contact information in an organization’s press release or other/any use in the media must be approved by the secretary of the charity. Please send queries to liz.blows@smssupportgroup.co.uk

Logos

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 admin@smssupportgroup.co.uk.

Photographs and graphics

The photographs and graphics on our website are not available for reproduction by third parties.

Linking policy

When linking to the website, web managers should be aware that the logos are not available for posting or replication on third party websites without a written agreement with the charity. See "logos" above for detsils.

Disclaimer

The Stiff Person 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 Person Syndrome charity website should not be considered medical guidance or professional advice. The Stiff Person 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.

Security and privacy policy

The Stiff Person 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.

Information collection

We collect two types of information on our website:

  1. 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.

  2. 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 Person 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 Person 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 you Stiff Person 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 receive Stiff Person 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 Person 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.

Your consent

By using the Stiff Person 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.

Your choice

We respect your privacy and recognize that you may wish to limit the ways in which we contact you. Simply send an email to liz.blows@smssupportgroup.co.uk 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 Person 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 Person Syndrome charity, please provide your name and a sentence requesting a review or a correction.

Security

We take every precaution to protect your personal information. At the Stiff Person 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 admin@smssupportgroup.co.uk.

Cookies

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.

Log files

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.

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Copyright © 2018 Stiff Man Syndrome Charity. All rights reserved

UK Telephone: 01482 868881  

Stiff Man Syndrome UK and Ireland Support Group and Charity: Founded in 1998 by Liz Blows

Stiff Man Syndrome Support Group and Charity: Liz Blows (Chair), 75 Normandy Avenue, Beverley, East Yorkshire, HU17 8PF
Stiff Man Syndrome Support Group and Charity is not-for-profit
Charity Number: 1099206

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