Terms Of Use

The following terms constitute an agreement between you and the Superficial Siderosis Research Alliance, INC. a 501(c)(3) nonprofit organization, the operator and administrator of the Superficial Siderosis Patient Registry, superficialsiderosis.org (the “SSPR Site”). This agreement governs your use of the SSPR Site, both as a casual visitor and a registered participant as described below.

By accessing or using the SSPR Site, you agree to be bound by the terms of this Agreement. To the extent you register on the SSPR Site as a member participant of any group then in addition to the conditions that apply to all users of the SSPR Site, the terms that apply only to registered members shall apply to you too.

Registration  Eligibility

To become a registered participant and access a registered group area on this SSPR Site (the “Profile Category Area”), this SSPR Site requires that you are either an (a) diagnosed superficial siderosis patient, a parent or legal guardian acting for such a patient who is under 18 years of age or caregiver, family member or legal representative of a superficial siderosis patient eligible to register.

Children under the age of 18 are prohibited from registering without the consent and guidance of a legal guardian. By registering as a member, you represent that you are age 18 or older.

This Site Does Not Provide Medical Advice

All of the material provided on the SSPR Site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, and any other material provided on the SSPR Site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the help of your physician or another qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on this SSPR Site.

If you think you may have a medical emergency, call your doctor or 911 immediately.

Acceptable and Lawful Use of Site by Registered Participants

Participants  shall not post or upload any information or other content on the SSPR Site that (a) is false, inaccurate or misleading; (b) is obscene or indecent; (c) infringes any copyright, patent, trademark, trade secret or other proprietary rights or rights of publicity or privacy of any party; or (d) is defamatory, libelous, threatening, abusive, hateful, or contains pornography.

All registered participants represent and warrant that the information they provided when registering and all information that they subsequently offer regarding themselves and their diagnosis, caregiver status, or legal guardian status, is correct and accurate and not misleading.

Superficial Siderosis Organizations and Nonprofits

All Superficial Siderosis related organizations, Nonprofit Groups, Associated Websites or Rare Disease Groups may post event information and highlight services available to registered participants on the Organization page (Public Viewing Area). All organizations will be required to submit an organization registration containing contact information and linked website.

No Interference with Operation of Site

You may not use any robot, spider, scraper, crypto miner, or other automated means to access the Site or content or services provided on the Site for any purposes. You may not post content on the SSPR Site that contains any viruses, Trojan horses, worms, time bombs, spiders, or other computer programming routines that are intended to damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information. You shall not attempt to make the SSPR Site unavailable through denial-of-service attacks or similar means. You shall not use the contact information provided by registered participants, or collect information about our participants to facilitate the sending of unsolicited bulk communications such as SPAM or SPIM or allow others use of your designated account to take such actions.

The site is for Non-Commercial Use Only

The SSPR Site content, including the registered patient areas and the material and information contained in the Public Viewing Area, is for the personal use of individual registered participants only and may not be used in connection with any commercial endeavors. Organizations, companies, and businesses may not become registered participants and should not use the SSPR Site without express consent from the SSPR Site administrator. Registered participants of the SSPR Site with individual commercial interests may not solicit or overtly promote their products or services. All content shared on the site is not for external use. To garner permission and access to registered patient data please visit the research data link  Representatives from life sciences, and insurance companies are prohibited from creating profiles in this registry.


You agree that you have read, understood, and accepted the SSPR Site Privacy Policy. This policy explains the SSPR Sites collection of personal and non-personal information from you when using the SSPR Site and its use of and sharing of such personal and non-personal information.

You agree not to disclose to any person or entity personally identifiable information about other registered participants that you encounter while using this SSPR Site without the express consent of such participants. You may disclose information of a general nature (that could not identify the participants who provided such information or whom such information is about) to third parties outside this SSPR Site, subject to the above restriction on non-commercial use.

Digital Millennium Copyright Act

If you are a copyright owner or an agent thereof and believe that any User Submission or other content at this SSPR Site infringes upon your copyright, you may submit a written notification pursuant to the Digital Millennium Copyright Act (“DMCA”) (see 17 U.S.C. 512(c)(3) for further information) by providing our Copyright Agent (listed below) with the following information: (i) an electronic or physical signature of a person authorized to act on behalf of the owner of an exclusive right that is allegedly infringed; (ii) a description of the copyrighted work claimed to have been infringed or if multiple copyrighted works are covered by a notification, a representative list of such works at our Site; (iii) a description of the location on the Site of the allegedly infringing material(s); (iv) your address, telephone number, and email address; (v) a written statement that you have a good faith belief that use of the material(s) in the manner complained of is not authorized by the copyright owner, its agent, or the law; and (vi) a written statement that the information in the notification is accurate, and under penalty of perjury, that you are authorized to act on behalf of the owner of an exclusive right that is allegedly infringed. You acknowledge that if you fail to comply with all of the notice requirements of the DMCA, your notice may not be valid.

Registered Participants Password

You are responsible for maintaining the confidentiality of your registration password and login and are entirely responsible for all activities that occur under your password or account with or without your knowledge. If you knowingly provide your login and password information to another person, your registration privileges may be suspended temporarily or terminated. You agree to immediately notify the SSPR Site of any unauthorized use of your password or login or any other breach of security.

Links to Other Websites

The SSPR Site may contain links to other websites that are not under our control. The inclusion of any link does not imply endorsement of the site and is not responsible for the content of such linked sites.

Registration Termination

You agree that the SSPR Site may, with cause, immediately terminate your access to the SSPR Site without prior notice. IF YOUR ACCESS IS TERMINATED, YOU HAVE THE OPTION TO REQUEST YOUR DATA IS REMOVED.  Without limiting the foregoing, the following may lead to a termination by the SSPR Site of a member’s membership and use of the Site: (a) breaches or violations of this Agreement or other incorporated agreements or guidelines, (b) requests by law enforcement or other government agencies, (c) a request by you (self-initiated registration cancellation), (d) unexpected technical issues or problems, and (e) extended periods of inactivity.

Modifications to this Agreement

We reserve the right to modify this Agreement at any time, and without prior notice, by posting amended terms on this SSPR Site. We encourage you to review this Agreement periodically for any updates or changes, which will have an effective update date.


Registration on the Superficial Siderosis Patient Registry is free.

Disclaimer of Warranties

The SSPR Site and the content and services made available on the Site are provided on an “as is” and “as available” basis. The Superficial Siderosis Research Alliance (as administrator) or the Superficial Siderosis Patient Registry does not make and disclaims all express and implied warranties and representations, including, but not limited to, any implied warranty of fitness for a particular purpose, concerning the SSPR Site, the SSPR Site content, or any advice or services provided through the SSPR Site to the extent permitted by law. The Superficial Siderosis Research Alliance (as administrator) or the Superficial Siderosis Patient Registry does not warrant that access to the SSPR Site or its content or services will be uninterrupted or error-free or that defects in the SSPR Site will be corrected.

Limitation of Liability

Under no circumstances shall Living With Superficial Siderosis (as administrator) or the Superficial Siderosis Patient Registry, its partners, contributors, agents, employees, directors, or affiliates be liable for any indirect, incidental, special, or consequential damages (even if it has been advised of the possibility of such damages) due to your use of this SSPR Site or due to your reliance on any of the content contained or the services provided on the SSPR Site.


You agree to indemnify and hold harmless The Superficial Siderosis Research Alliance (as administrator) or the Superficial Siderosis Patient Registry, its officers, employees, agents, subsidiaries, affiliates, and other partners, from and against any claims, actions or demands, liabilities, and settlements including without limitation, reasonable legal and accounting fees, resulting from or alleged to result from, your violation of this Agreement.

International Users

The Superficial Siderosis Research Alliance (as administrator) or the Superficial Siderosis Patient Registry makes no claims that information on the SSPR Site is appropriate or may be downloaded outside of the United States. Personal information (“Information”) that is submitted to this SSPR Site will be collected, processed, stored, disclosed, and disposed of by applicable U.S. law and our Privacy Policy. If you are a non-U.S. user, you acknowledge and agree that The Superficial Siderosis Research Alliance (as administrator) or the Superficial Siderosis Patient Registry may collect and use your Information and disclose it to other entities outside your resident jurisdiction. Also, such Information may be stored on servers located outside your resident jurisdiction. U.S. law may not provide the degree of protection for Information that is available in other countries. By providing us with your Information, you acknowledge that you consent to the transfer of such Information outside your resident jurisdiction as detailed in our Privacy Policy. If you do not agree to such a transfer, you may not use this SSPR Site.

Registered Participant Notices

If you register, you agree that the Superficial Siderosis Patient Registry may send notices to you by email at the email address you provide when registering  (or which you later update using the functionality of the Site). We will send you email notices of data or questionnaire requests made by clinicians for stored or new information. Any requests will include the intended use of your data, notice if there has been a request for personally identifying information, and allow you seven (7) days to opt-out of any specific request which includes personally-identifying information. If we do not receive notice within the prescribed time, we will take that as your consent to share your data.

Governing Law and Venue

This agreement shall be governed by the laws of the State of Texas and the applicable federal laws of the United States of America. All disputes arising under, or in any way connected with registered participation in or use of the SSPR Site, shall be litigated exclusively in the state courts residing in the State of Texas, County of Cass, and in no other court or jurisdiction. All costs of litigation (plaintiff and defendant) shall be born by the litigation initiator. By use and registration on the SSPR Site, you hereby submit to the jurisdiction of the courts as mentioned above and terms of litigation.

Miscellaneous Terms

The Superficial Siderosis Research Alliance (as administrator) or the Superficial Siderosis Patient Registry may assign this agreement at any time to a subsidiary or parent company or a successor to its organization as part of a merger or sale of substantially all of its assets. You may not assign or transfer this agreement.

If any provision of this Agreement is held to be unenforceable for any reason, the remaining provisions will be unaffected and remain in full force and effect.

For any questions or comments, or to report violations of this agreement, let us know, or contact us at:


Attn: User agreement Issues