Privacy and Disclaimer
Privacy & Security Policy
Last Updated: August 15, 2021
Superior Mesenteric Artery Syndrome Research Awareness and Support, a Texas non-stock corporation (“SMASRAS”, “us” “we”, or “our”) operates the smasyndrome.org website (the “Site”). This Privacy & Security Policy (this “Policy”) informs you of our policies regarding the collection, use and disclosure of personal data when you use the Site, and the choices you have associated with your data.
Acceptance of this Policy
As described in this Policy, we use your data to provide and improve the Site. By using the Service, you agree to the collection and use of information in accordance with this policy. If you do not accept the terms of this Policy, please stop using the Site.
Information You Provide Through the Site
While using the Site, personally identifiable information may include, but is not limited to your (a) email address; (b) first name and last name; (c) phone number; (d) address, state, province, zip/postal code, and city; and (e) cookies and usage data.
We may also invite you to share information with us when you register or join, such as on the “Personal Stories” webpage of the Site. This is at your option and not required to use the Site. Information gathered is for the purpose of helping us identify topics that are most relevant for our visitors, and to help clinicians, regulators, investigators, and manufacturers as they determine directions for research and treatment development by reviewing information we post to the Site. For any information that you choose to submit to the Site, we retain the right to modify the content for editorial purposes. Should you object to any modification, your sole remedy will be for us to promptly remove the content from the Site.
We use your information only for its intended business purpose. We do not sell or trade your information to other organizations or individuals. If you choose to send us email, we may retain the contents of your email message, our reply and your email address as part of our ongoing customer service efforts. We reserve the right to contact you after you have contacted us and may send future email and/or surveys to you about SMASRAS. You may notify us via email if you wish to discontinue electronic communication.
We keep your personal information as accurate, complete, and up to date as is required to fulfill the purpose(s) for which you provided us with your personal information. Upon written request we will remove your personal information from our databases, except where legislation or regulation requires our retention of it (for example, charitable giving history tied to income tax receipts). You may request a copy of your information, request to delete your information, or request to remove yourself from our databases by communicating with us via the contact information listed at the very end of this policy.
SMASRAS’s Use of Data
SMASRAS uses the collected data for various purposes, including: (a) to provide and maintain the Site; (b) to notify you about changes to our Site; (c) to allow you to participate in interactive features of our Site when you choose to do so; (d) to provide customer care and support; (e) to provide analysis or valuable information so that we can improve the Site; (f) to monitor the usage of the Site; (g) to detect, prevent and address technical issues.
Transfers and Disclosure of Your Data
Your information may be transferred to, and maintained on, computers located outside of your state, province, country or other governmental jurisdiction where the data protection laws may differ than those from your jurisdiction. If you are located outside United States and choose to provide information to us, please note that we transfer the data, including personal data, to the United States and process it there. Your consent to this Policy followed by your submission of such information represents your agreement to the transfer of that information. SMASRAS will take all steps reasonably necessary to ensure that your data is treated securely and in accordance with this Policy and no transfer of your personal data will take place to an organization or a country unless there are adequate controls in place, including the security of your data and other personal information.
SMASRAS shall provide you with the recipients or categories of recipients of your personal data, if any.
SMASRAS may disclose your personal data in the good faith belief that such action is necessary to: (a) to comply with a legal obligation; (b) to protect and defend the rights or property of SMASRAS; (c) to prevent or investigate possible wrongdoing in connection with the Site; (d) to protect the personal safety of users of the Site or the public; or (e) to protect against legal liability.
Security of Data
The security of your data is important to us but remember that no method of transmission over the Internet or method of electronic storage is 100% secure. While we strive to use commercially acceptable means to protect your Personal Data, we cannot guarantee its absolute security.
SMASRAS will work within 72 hours of a data breach to gather all related information, conduct a thorough investigation, inform regulators and impacted individuals of the breach, identify what personal data has been impacted and how; and draft a comprehensive containment plan, reporting data breaches to the relevant regulator. If we are unable to provide a notification within the 72-hour window, we will provide reasonable justification for the delay; which may be caused by potentially adding additional disruption to regular business operations and exasperating administrative hassle.
If you have any questions about this Policy, please contact us:
By visiting this page on our website: https://www.smasyndrome.org/contact-us
By phone number: (214) 697-7451
By mail: PO BOX 555
Bonham, TX 75418
The HIPAA Privacy Rule
The Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) are agencies of the U.S. Government conducting medical record review of persons who recently received a vaccine(s) and reported a health problem. CDC and FDA are public health authorities as defined by the Health Insurance Portability and Accountability Act (HIPAA), Standards for Privacy of Individually Identifiable Health Information; Final Rule (Privacy Rule) [45 CFR §164.501]. Pursuant to 45 CFR §164.512(b) of the Privacy Rule is applicable to the Superior Mesenteric Artery Syndrome Research Awareness and Support (SMASRAS) as follows:
Covered entities such as your organization may disclose, without individual authorization, protected health information to public health authorities ” . . . authorized by law to collect or receive such information for the purpose of preventing or controlling disease, injury, or disability, including, but not limited to, the reporting of disease, injury, vital events such as birth or death, and the conduct of public health surveillance, public health investigations, and public health interventions . . . “
The CDC and the FDA conduct surveillance for vaccine associated adverse events through SMASRAS, a public health activity as described by 45 CFR § 164.512(b), as authorized by 42 USC 300aa-25. The information being requested represents the minimum necessary to carry out the public health purposes of this project pursuant to 45 CFR §164.514(d) of the Privacy Rule.