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Privacy Policy


Last updated: May 5, 2019

Hello Project FAVA supporter!

​If you have come to this page, it must mean you value your privacy.  We understand perfectly, and we value it too.  We also want you to be familiar with the privacy policy (the “Policy”) that governs how we treat the information you provide to us through: (i) (our “Website”);  (ii) Donorbox, AmazonSmile,, and corporate matching programs (our “Donation Platforms”); (iii) payment processors, such as Stripe and Plaid (“Payment Processors”); and (iv) by phone, email, or in writing.  We want you to be familiar with how we collect, use, and disclose information relating to you, your computer, or your device and that enables your identification.  We may modify this Policy from time to time, and we will post the current Policy on our Website. We encourage you to periodically review this Policy to stay informed about our privacy practices. In that spirit, here is our Policy, to be read and enjoyed at your leisure!  

1.  What Information Do We Collect?

By joining Project FAVA, subscribing to our newsletter, responding to our requests for information, submitting a complaint, or simply contacting us, you voluntarily provide us with details about you that includes your Personal Information. “Personal Information” means information that can be used to directly identify you, and most frequently includes your name, residential address, phone number, email address, pictures and videos showing your face, and your social media accounts. 

Although the purpose of this Website is to drive FAVA research and to cultivate a sense of community among FAVA patients, we ask that you do not provide us with “Sensitive Information” without our express invitation to do so, even if you believe that such information may help others in the medical, scientific and FAVA patient community better understand and manage this rare disease.  Sensitive Information includes your age, gender, ethnicity, state, country, disability status, medical history, pre-existing medical conditions, the physicians who’ve treated you, the physicians who are currently treating you, the location and description of your FAVA symptoms, when and how the FAVA symptoms began, successful and unsuccessful protocols in managing your FAVA symptoms, pictures of your FAVA symptoms, and other such information.  If you provide us with Sensitive Information without our request, we reserve the right (but do not have any obligation) to erase any such information at our discretion.

When you visit our Website, our servers may also automatically collect technical information that does not identify you personally (“Technical Information”). Technical Information may include information about your device, operating system, and IP address, as well as information about your usage of the Website such as page views, clicks, and information about any errors that occur. Our Website does not currently respond to “Do Not Track” settings of web browsers.

2.  How Do We Use Information?

Our Website provides information about FAVA to FAVA patients, doctors, researchers, caregivers and the community at large by publicly sharing anonymized or aggregated information based on Sensitive Information (“Anonymized Sensitive Information”).  However, because of the small size of the FAVA community, there is a chance that even after anonymization, the Anonymized Sensitive Information may still lead to your identification by others.  Your identification is not our goal.  We publicly share Anonymized Sensitive Information in the hope that the data we provide will raise awareness, provide support, and show a pattern, prevalence, or the missing link that will lead to treatments and/or a cure for FAVA.  You are in the best position to decide if the Sensitive Information you provide could still lead to your identification after anonymization or aggregation, how comfortable you would feel if you were identified, and what the implications of being identified would be to you in your personal situation.  

We may use your Personal Information to: (i) send you notices of advancements in medical research and treatments; (ii) send you notices of opportunities to participate in ongoing medical research; (iii) respond to your inquiries and communications; (iv) register you for our mailing list; (v) register you for online activities such as: donation processing, surveys, volunteer applications, event RSVP, sharing your story on our Website, and otherwise fulfill the purpose for which you provided your Personal Information; (vi) administer your donation request; (vii) send you notices about donations; (viii) make improvements to our Website; (ix) protect the security or integrity of the Website; and (x) as otherwise reasonably required to comply with applicable policies, laws, rules, and regulations. 

We may use Technical Information, which does not identify you, in any way we deem appropriate (including to maintain and improve our Website and services). If you would like to be removed from our mailing list, please contact us at or click the “unsubscribe” link in the applicable email. 

3.  How Do We Share Information?

We do not sell your Personal Information to third parties. 

Without obtaining your further consent, we may share your Personal Information with: (i) third party service providers who assist in our operations, including but not limited to third party Donation Platforms, mail processors, and Payment Processors; and (ii) as reasonably required to comply with applicable policies, laws, rules, and regulations.  For example, if you have made a donation through Donorbox, we may share your Personal Information with Donorbox so that Donorbox can assist us in preparing and mailing you your donation receipt.  Further, as we rely on third party Payment Processors to process donations made by a credit card or bank transfer, we may share your Personal Information with such third party Payment Processors so that they can process your donation, investigate any dispute or fraud in connection with your donation, or for any other legitimate purpose in connection with the processing of your donation.  Your Personal Information may be shared with our mail processors so that we can send you notices and communicate with you.  

In other cases, we may share your Personal Information based on your instructions, such as if you choose to be listed on our Website as a donor, or if you choose to make a donation to a specific recipient and wish to be identified to that recipient.

We do not publicly share Sensitive Information without your express consent. However, we may publicly share Anonymized Sensitive Information with e.g., medical providers, scientists, or the community at large without obtaining your further consent.  For example, we may publish on our Website statistical information such as the number of FAVA patients registered with us or the percentage of FAVA patients affected by FAVA in a particular body part. 

We may share Technical Information in any way we deem appropriate.

4.  Updating Personal Information

Please contact us at if you would like to correct or amend any of your Personal Information (such as your contact information). 

5.  Third Party Links and Services

Our Website and other materials may contain links to websites or services owned or operated by third parties (“Third Party Links”).  These Third Party Links are not under our control, are not subject to this Policy, and any information that you provide after activating a Third Party Link goes directly to the third party operating the Third Party Link without passing through our Website.  For example, if you make a donation using the “Donate Now” Third Party Link, your payment credentials (e.g., credit card or bank account number) will be sent directly from you to a third party Donation Platform or Payment Processor without retransmission by us. Therefore, we do not receive, transmit, or store your payment credentials. As we do not guarantee the safety or security of any Third Party Links, for your own security, please verify the authenticity of the Third Party Link, and review the Third Party Link’s terms of use and privacy policy, before you provide any Personal Information (especially payment credentials) to any Third Party Link.  If you make a non-anonymous donation via a Third Party Link, we may receive a receipt of your transaction including your full name, email address, and redacted payment credentials.  We treat Personal Information received from Third Party Links the same way we treat Personal Information received from other sources, i.e., in accordance with this Policy. 

6.  Children’s Privacy

We do not knowingly collect Personal Information directly from anyone under the age of 13. Parents and legal guardians may provide us Personal Information about their children. If we become aware that we have in our possession or control any Personal Information regarding an individual under the age of 13 that has not been provided by a parent or legal guardian, or a parent or legal guardian wishes to remove such Personal Information, we will use commercially reasonable efforts to promptly remove such Personal Information from our systems.

7.  Contact

If you have any further questions concerning this Policy, please contact

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