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What Is Stiff Person Syndrome

SPS Resources

Understanding SPS
Ask A Doctor
SPS Resources

Medical Institutions

Cleveland Clinic
John Hopkins Medicine Stiff Person Syndrome Center
Mayo Clinic, Rochester, MN
Thomas Jefferson University Hospital
National Inst of Neurological Disorders and Stroke

Organizations

European Alliance of Neuromuscular Disorders
Genetic and Rare Diseases (GARD) Info Center
International Parkinson and Movement Disorder Society
IP&MDS SPS
National Health Council, American Autoimmune Related Diseases Association
National Organization for Rare Disorders
Stiff Person Syndrome Action Network

Support Groups

Stiff Person Syndrome Support
Rare Caregiver

Facebook Groups

Stiff Person Syndrome Association Online
Stiff Person Syndrome – Living Forward
Stiff Person Syndrome – The Official UK and Ireland Support Group
SPS Sisters

Patient Web Sites

My Life with Stiff Person Syndrome
Run to Live Nic Weinfield
Stiff Person Syndrome
Stiff Person Syndrome – Living Forward
Larry B. Mellick, MD - YouTube video about a patient's experience with SPS

Research & Medical Articles

BMC Neurology
BMJ Journals
ClincialTrials.Gov
FredHutch.Org
Healthline
JAMA Neurology
Journal of Medical Case Reports
MDedge Neruology
MDEdge Psychiatry
MedicineNet
MedScape
Neurology
The Lancet

About The SPSRF
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8621 Burdette Road

Bethesda, Maryland 20817

Phone (301) 541-7449

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EIN 84 - 2291780

© 2023 The Stiff Person Syndrome Research Foundation

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Privacy Policy

What Information Do We Collect? When you visit our website you may provide us with two types of information: personal information you knowingly choose to disclose that is collected on an individual basis and website use information collected on an aggregate basis as you and others browse our website.
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How Do We Use the Information That You Provide to Us? Broadly speaking, we use personal information for purposes of administering our business activities, providing service and support and making available other products and services to our customers and prospective customers. Occasionally, we may also use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. The lists used to send you product and service offers are developed and managed under our traditional standards designed to safeguard the security and privacy of all personal information provided by our users. You may at any time to notify us of your desire not to receive these offers.
What Are Cookies? Cookies are a feature of web browser software that allows web servers to recognize the computer used to access a website. Cookies are small pieces of data that are stored by a user's web browser on the user's hard drive. Cookies can remember what information a user accesses on one web page to simplify subsequent interactions with that website by the same user or to use the information to streamline the user's transactions on related web pages. This makes it easier for a user to move from web page to web page and to complete commercial transactions over the Internet. Cookies should make your online experience easier and more personalized.
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Notice of New Services and Changes Occasionally, we may use the information we collect to notify you about important changes to our website, new services and special offers we think you will find valuable. As a user of our website, you will be given the opportunity to notify us of your desire not to receive these offers by clicking on a response box when you receive such an offer or by sending us an email request.
How Do We Secure Information Transmissions? When you send confidential personal information to us on our website, a secure server software which we have licensed encrypts all information you input before it is sent to us. The information is scrambled en route and decoded once it reaches our website. Other email that you may send to us may not be secure unless we advise you that security measures will be in place prior to your transmitting the information. For that reason, we ask that you do not send confidential information such as Social Security, credit card, or account numbers to us through an unsecured email.
How Do We Protect Your Information? Information Security -- We utilize encryption/security software to safeguard the confidentiality of personal information we collect from unauthorized access or disclosure and accidental loss, alteration or destruction. Evaluation of Information Protection Practices -- Periodically, our operations and business practices are reviewed for compliance with organization policies and procedures governing the security, confidentiality and quality of our information. Employee Access, Training and Expectations -- Our organization values, ethical standards, policies and practices are committed to the protection of user information. In general, our business practices limit employee access to confidential information, and limit the use and disclosure of such information to authorized persons, processes and transactions.
How Can You Access and Correct Your Information? You may request access to all your personally identifiable information that we collect online and maintain in our database by emailing us using the contact form provided to you within the site structure of our website.
Do We Disclose Information to Outside Parties? We may provide aggregate information about our customers, sales, website traffic patterns and related website information to our affiliates or reputable third parties, but this information will not include personally identifying data, except as otherwise provided in this privacy policy.
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Terms & Conditions

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We are grateful for your donation and support of our organization. If you have made an error in making your donation or change your mind about contributing to our organization please contact us. Refunds are returned using the original method of payment. If you made your donation by credit card, your refund will be credited to that same credit card.

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Ongoing support is important to enabling projects to continue their work, so we encourage donors to continue to contribute to projects over time. But if you must cancel your recurring donation, please notify us.

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About The SPSRF
What Is Stiff Person Syndrome
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Get Involved

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