Terms / Conditions / Privacy

The Spinal CSF Leak Foundation (the “Foundation”) is a 501(c)(3) nonprofit health foundation dedicated to raising awareness, providing educational information, and funding ongoing and new research for spinal CSF leaks.

By visiting this website (the “Site”), you agree to the following privacy policy and terms and conditions of use (collectively, the “Terms”), which may be modified from time to time by posting the amended terms on our Site. Please read the Terms carefully. If you do not agree to these Terms, you should not enter the Site.

These Terms were last updated on October 24, 2022.

 

 

PRIVACY

The Foundation is committed to respecting the privacy of our Site visitors. This section describes our privacy policy regarding the information we collect from you during your visit to the Site, how we may use it, and how we will protect the information which you choose to provide us.

What information do we collect and how do we use it?
You may browse the Site without identifying yourself, or providing any personally identifiable information or personal data. “Personally identifiable information” includes your name, address, zip code and telephone number, e-mail address, and any other information which might be used to identify you individually.

You may provide personally identifiable information to us while using the Site in the following situations: 1) while making a donation; 2) when ordering from the Foundation’s online store; 3) while communicating with the Foundation; or 4) when requesting to be added to the Foundation’s newsletter distribution list.

If you decide to support the activities of the Foundation by making a tax-deductible contribution with a credit card, and/or if you order items from our online store, we will collect the information needed to complete the transaction via the Site and payment via a third-party processor. Please be aware that third-party payment processors have their own privacy policies, and those terms will apply to how they use your data.

If you contact the Foundation via our contact form on the Site, we will collect the information necessary to respond to you such as name and email address, and also will receive any information you disclose in your message.

What security do we have in place to protect your personal data?
The Foundation uses uses multiple safeguards to protect your information from unauthorized access, such as firewall technologies and Secure Socket Layer (SSL) security for the Site. Despite use of these safeguards, we cannot guarantee and do not represent that your information will always be secure from unauthorized access by third parties.

All credit card information collected through donations online are processed with SSL security, which transmits your information using server authentication and data encryption to ensure that your data is safe, secure, and available only to authorized staff members of the Foundation or third-party payment processors.

Personally identifiable information will never be sold, rented or exchanged outside of the Foundation. However, the Foundation and our affiliates may disclose your personally identifiable information if required to do so by law, or in the good-faith belief that such action is necessary to: (1) conform to the requirements of the law or comply with governmental orders, court orders, or legal process; (2) protect and defend the property or rights of the Foundation and affiliates.

Minors
The Site is not intended for minors (people under the age of 13, or similar age depending on jurisdiction), and the Foundation does not collect personally identifiable information from any person we actually know is a child under the age of 13. The Foundation is committed to protecting children’s privacy. If you become aware of any personal data we have collected from a minor, please contact the Foundation. If we learn that we have collected personal data from a minor, we will take steps to delete the data without notice as soon as possible.

Special categories of data
We do not intentionally collect any “special categories of data” under the EU General Data Protection Regulation (GDPR), the UK General Data Protection Regulation (“UK GDPR”), or the Protection of Personal Information Act (“POPIA”). Special categories of data include personal data (1) revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, or trade union membership; or (2) concerning health or data concerning a natural person’s sex life or sexual orientation. If ever we do start collecting this data, we would do so with your explicit consent for a particular purpose, or as required or permitted by applicable law.

Data we collect automatically, such as cookies, pixel tags, ID logs, and similar technologies
When you visit the Site, we may automatically collect certain non-personally identifiable data, which we use to troubleshoot, run and administer the Site, analyze trends and track user movement, gather engagement information, measure the effectiveness of the links, Content and flow of information, and comply with applicable law, and cooperate with law enforcement activities.

Depending on your browser settings, the Site may use cookies. ‘Cookies,’ are alphanumeric identifiers that are transferred to your computer through your web browser. Cookies enable the Foundation to collect non-personally identifiable information, such as the pages or posts you visited, or the links you clicked on during your Site visit, your IP address, session IDs, the browser program you use and the type of device (mobile or desktop) you are visiting the Site with. You may accept, reject, or elect to receive notifications about cookies via your browser on your computer or mobile device.

We use “Google Analytics” to collect information about use of the Site. Google Analytics is a web analytics service that uses cookies to track information about the use of the Site such as how often users visit, what pages they visit when they do so, and what other websites they used prior to coming to the Site. This information is used to improve the Site, user flow, and user experience. Google Analytics only collects the IP addresses assigned to you on the date you visit the site, and not your name or any other personally identifying information. Information collected through the use of Google Analytics is not combined with personally identifiable information we may collect otherwise via the Site.

We may also share aggregated user information, such as the numbers and frequency of visitors to the Site and their user flow, with our authorized third-party service providers to better improve the Site and its design. This data is only provided and used in the aggregate, and not in a way that could identify you or any user personally.

Legal bases under the GDPR, UK GDPR, or POPIA
If you are located within the European Economic Area (EEA), the United Kingdom (UK) or in South Africa, we will collect and use your personal data only if we have one or more legal bases for doing so under the GDPR, UK GDPR, or POPIA, as applicable. We will only collect and use your personal data only where: (1) you have provided consent for a specific purpose; (2) it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests; or (3) it is necessary to comply with a legal obligation. In each case, the Foundation will indicate the legal basis or bases that we are relying upon for disclosure. If dependent on your initial consent, we will notify you and seek additional consent prior to using any personal data for a new purpose that differs from the original basis for your consent, if any.

Options under European Union Law
If your personal data is to the protections required by European Union law, you may:

• Access, correct, update or request deletion of any personal data you we have for you at any time by contacting us using the contact form on the Site;
• Object to or ask us to restrict the processing of any personally identifiable information we have;
• Withdraw your consent if we have collected and processed your personally identifiable information with your prior consent.

To exercise any of these rights please contact us.  (If you are not subject to European Union law, these rights do not apply to you.)

How can you contact us to review, correct, or delete your personal information?
You may unsubscribe from our distribution newsletter via the last distribution you received, or by emailing us at staff@spinalcsfleak.org You may contact us at staff@spinalcsfleak.org to request a review, correction, or removal of your personally identifiable information.

 

INTELLECTUAL PROPERTY

You acknowledge that the Site contains information, including data, graphics, summaries, study abstracts, images, curated directories of medical professionals treating spinal CSF leak, interviews with and/or comment by medical professionals, and other materials, both tangible and intangible (collectively, “Content”) that is protected by copyrights, trademarks, trade secrets, service marks, or other proprietary rights, and that these rights are valid and protected in all forms, media, and technologies existing now or developed in the future. You also acknowledge that the Content is and will remain the property of the Foundation, or to any other party who has been involved in the preparation and publication of the Content. You will at no time assert any claims of ownership over any content by reason of your use of or any right to use this Site and will not grant or create or suffer to exist any lien or other security interest arising the Content. You agree to comply with all copyright and trademark laws and you will not encumber any interest in, or assert any rights to, the Content. You may not modify, remove, publish, transmit, transfer, or create derivative works based on any Content, in whole or in part, except for the personal, noncommercial use of certain Content, as specifically set forth below. This prohibition includes the use of the Foundation’s logo, icon, and registered trademarks and service marks. 

Personal, noncommercial use: You may review, copy, print, distribute, or use copies of the Content, including any downloadable resources provided on the Site, provided that such use is for personal, noncommercial use. You may not sell or exploit the Content or downloadable resources, or otherwise distribute them for a fee. Any intellectual property notices in the Content (such as, without limitation, any trademarks or copyright notices like © 2022 Spinal CSF Leak Foundation. All rights reserved) must be maintained in those copies. 

 

MEDICAL AND GENERAL DISCLAIMER

The Foundation is not a medical facility, and does not provide medical advice. By using the Site, you acknowledge that the Content is provided for education and information purposes only. The Content should not be construed as a diagnosis, treatment plan, regimen, or any other health-care advice or instruction.

The Content and the Site do not represent individual medical advice, counsel concerning treatments or medical care, or any other recommendations, and are not intended a substitute for a visit with a physician or other qualified health professional for help, diagnosis, guidance, or treatment of any medical question or condition for you or your family. The Content is intended to offer only general information for you to discuss with your health care provider, and you should not rely on any information on the Site to replace consultations with any qualified healthcare professionals regarding your individual health needs.

The information included in the physician directory on the Site is based solely upon data provided to the Foundation by each healthcare professional, and the Foundation does not have ownership or direct financial interest in any of the specific doctors or clinics listed on the Site.

Although efforts are made to include material on the Site that is accurate and timely, the Content is provided “as is” and there are no representations or warranties, express or implied, regarding errors, omissions, completeness or accuracy of the Content provided, or that it will be free from bugs, defects or errors, or available without interruption. Reliance on any information provided by the Foundation appearing on, or provided in relation to, the Site is solely at your own risk. The Foundation disclaims any responsibility and liability of any kind in connection with your use of the Content, and takes no responsibility for viruses that may damage your computer system or data resulting from your access to or use of the Site or the Content contained on the Site.

 

THIRD PARTY LINKS AND AMAZON AFFILIATES

Any other websites linked from the Site are provided as a courtesy and created by organizations outside the Foundation. Those organizations are responsible for the information contained within their sites, and any comments regarding these sites should be directed to that individual organization. They are not intended to nor do they constitute an endorsement by the Foundation of the linked materials, and the Foundation provides such links for convenience only.

The Foundation is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program that enables the Foundation to earn fees by linking to Amazon.com and affiliated sites. When you purchase qualifying products from Amazon using our affiliate link, we will earn a small commission.

 

LIMITATION OF LIABILITY

Under no circumstances will the Foundation or any other party involved in producing, editing, or creating the Site be liable for any direct or indirect damages, claims, demand, causes of action or losses, direct or indirect, special, incidental, consequential, exemplary, or punitive (including attorney’s fees and costs) as a result of your use of, or inability to use, the Site or any Content herein. You hereby acknowledge that this paragraph will apply to all Content and services available through the Site.

Some states do not allow the exclusion or limitation of liability for certain damages, including fraud, fraudulent misrepresentation, and failure to disclose defects. Nothing in these terms will be construed as excluding liability that cannot be excluded under applicable law, and in such states, liability is limited to the fullest extent permitted by law.

 

INDEMNITY

By using the Site, you agree to indemnify and hold harmless, and at the Foundation’s request, defend us and/or our officers, employees and providers from all claims, actions, judgments, and liabilities (including, without limitation, costs, expenses and attorneys’ fees) that we may occur arising out of or relating to your access to, conduct on, or use of the Site, or a violation or breach of these terms or the rights of a third party.

 

NO ENDORSEMENTS

In providing the Content, the Foundation does not recommend, endorse, or confirm the certification of any medical professional mentioned on the Site.  The Content is also not intended to constitute an endorsement of any particular test, treatment, procedure, or service. Statements or opinions expressed by physicians, the Medical Advisory Board, patients, or other independent authors in Content, including via interviews, reflect the views of each such individual and do not necessarily reflect the views or any official policy of the Foundation. The Content is provided for education and informational purposes only.

As a 501(c)(3) organization, the Foundation does not endorse or oppose any candidate for political office.

 

CHARITABLE SOLICITATION REGISTRATIONS

The Foundation is registered in all states that require charitable solicitation registrations, as well as in the District of Columbia. See here for the full details for each registration and required disclosure statements.

 

INTERNATIONAL USE; JURISDICTION

The Foundation is headquartered in the United States and that the Sites and Content are governed by United States law. By accessing the Site, you agree that the laws of the State of Washington will govern your use of this Site, the Terms, and any dispute or claim based on your use of the Site or the Content.

You agree that any action or proceeding related to your use of the Site will only be brought by you in the courts of Washington State, USA. You agree that if you choose to access this Site from other states in the United States, you do so at your own risk and are responsible for compliance with any and all local laws, if and to the extent local laws are applicable. The Foundation makes no representation that the Site or Content are appropriate or available for use in locations outside of the United States, and those who choose to access the Sites and Content from locations outside of the United States do so on their own initiative and are responsible for compliance with applicable local laws.

 

GENERAL TERMS

These Terms set forth the entire understanding and agreement between the Foundation and you with respect to the Site, its uses, Content, and services. If any provision of these Terms is held by a court of competent jurisdiction to be illegal, invalid, or unenforceable, the remaining provisions will remain in full force and effect. You and the Foundation intend that the provisions of these Terms be enforced to the fullest extent permitted by applicable law.

The Foundation maintains the right to modify these Terms and Conditions of Use at any time, and your continued use of the Site after the date that such notice is posted will be deemed to be your agreement to the changed terms. These Terms supersede all prior or contemporaneous representations, understandings, agreements, or communications between you and us, whether written or verbal, regarding the subject matter of these Terms. Any rights not expressly granted herein are reserved.

 

CONTACT US

If you choose to email us through our “contact us” page, be aware that this method of messaging is not encrypted and is therefore not secure. This “contact us” email is intended to allow you to obtain information about the Foundation, and should not be used to submit personal medical information, and/or request medical advice.