Your privacy and how we handle it
This privacy notice for Someone Who Knows ('Company', 'we', 'us', or 'our'), describes how and why we might collect, store, use, and/or share ('process') your information when you use our services ('Services'), such as when you:
– Visit our website at http://www.someonewhoknows.org, or any website of ours that links to this privacy notice
– Take part in a matching round
– Engage with us in other related ways, including any sales, marketing, or events.
Questions or concerns? Reading this privacy notice will help you understand your privacy rights and choices. If you do not agree with our policies and practices, please do not use our Services. If you still have any questions or concerns, please contact us at alex@someonewhoknows.org.
SUMMARY OF KEY POINTS
This summary provides key points from our privacy notice, but you can find out more details about any of these topics by clicking the link following each key point or by using our table of contents below to find the section you are looking for.
What personal information do we process?
We don't process any personal information unless you sign up to receive matching invitations, in which case we store your name and the email address you give to us. When you agree to join a matching round, we process personal information you tell us about what you want to talk about. Learn more about personal information you disclose to us below.
We may also from time to time invite you to participate in surveys we run, in which case we will process the information you provide to the questions asked. Usually these will be anonymous, so we won't link you to the answers provided. We'll always tell you if a survey isn't anonymous.
Do we process any sensitive personal information?
When you opt in to a matching round, we will need to ask some basic questions about the medical condition you want to discuss. Learn more about how we do this below.
Do we receive any information from third parties?
We do not receive any information from third parties.
How do we process your information?
We process your information to provide, improve, and administer our Services, communicate with you, for security and fraud prevention, and to comply with law. We may also process your information for other purposes with your consent. We process your information only when we have a valid legal reason to do so. Learn more about how we process your information below.
In what situations and with which parties do we share personal information?
We might share de-identified (ie. anonymous) and / or aggregated data with 3rd parties for research purposes. De-identified means that this information is never linked to you, and usually any information we pass on will be aggregated too – in other words, we share insights based on trends we find by gathering lots of data together.
We use a 3rd party mailing list software called Brevo.com to store your name and email only. We never store anything relating to your health on Brevo.
Learn more about how and when we might share personal information below.
How do we keep your information safe?
We have organisational and technical processes and procedures in place to protect your personal information. However, no electronic transmission over the internet or information storage technology can be guaranteed to be 100% secure, so we cannot promise or guarantee that hackers, cybercriminals, or other unauthorised third parties will not be able to defeat our security and improperly collect, access, steal, or modify your information. Learn more about how we keep your information safe below.
What are your rights?
Depending on where you are located geographically, the applicable privacy law may mean you have certain rights regarding your personal information. Learn more about your privacy rights below.
How do you exercise your rights
The easiest way to exercise your rights is by contacting alex@someonewhoknows.org. We will consider and act upon any request in accordance with applicable data protection laws.
Want to learn more about what Someone Who Knows does with any information we collect?
Review the privacy notice in full below.
TABLE OF CONTENTS
1. WHAT INFORMATION DO WE COLLECT?
2. HOW DO WE PROCESS YOUR INFORMATION?
3. WHAT LEGAL BASES DO WE RELY ON TO PROCESS YOUR PERSONAL INFORMATION?
4. WHEN AND WITH WHOM DO WE SHARE YOUR PERSONAL INFORMATION?
5. HOW LONG DO WE KEEP YOUR INFORMATION?
6. HOW DO WE KEEP YOUR INFORMATION SAFE?
7. DO WE COLLECT INFORMATION FROM MINORS?
8. WHAT ARE YOUR PRIVACY RIGHTS?
9. CONTROLS FOR DO-NOT-TRACK FEATURES
10. DO CALIFORNIA RESIDENTS HAVE SPECIFIC PRIVACY RIGHTS?
11. DO WE MAKE UPDATES TO THIS NOTICE?
12. HOW CAN YOU CONTACT US ABOUT THIS NOTICE?13. HOW CAN YOU REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?
1. WHAT INFORMATION DO WE COLLECT?
Personal information you disclose to us.
In Short:
We collect personal information that you provide to us.
We collect personal information that you voluntarily provide to us when you register on the Services, express an interest in obtaining information about us or our products and Services, when you participate in activities on the Services, or otherwise when you contact us.
Personal Information Provided by You.
The personal information that we collect depends on the context of your interactions with us and the Services, the choices you make, and the products and features you use. The personal information we collect may include the following:
– email addresses
– names
Sensitive Personal Information Provided by You.
Sensitive Personal Information describes things like:
– your medical diagnosis
– how long you've lived with a medical condition
– what treatment stage you are at
All personal information that you provide to us must be true, complete, and accurate, and you must notify us of any changes to such personal information.
2. HOW DO WE PROCESS YOUR INFORMATION?
In Short:
We process your information to provide, improve, and administer our Services, communicate with you, for security and fraud prevention, and to comply with law. We may also process your information for other purposes with your consent.
We process your personal information for a variety of reasons, depending on how you interact with our Services, including:
– To facilitate account creation and authentication and otherwise manage user accounts. We may process your information so you can create and log in to your account, as well as keep your account in working order.
– To save or protect an individual's vital interest. We may process your information when necessary to save or protect an individual’s vital interest, such as to prevent harm.
We process your sensitive personal information for the purposes of delivering our Services.
– So that we can find another person in our community who lives with the same condition as you or who shares other aspects of your lifestyle. This is what we call making a match for a 1-1 conversation, and we only do this when you tell us you want to join a matching round.
This information is identifable, ie. we need to link it to you in order to deliver our Services, which in this case means to find you a match. Once the match has been made and your conversation has taken place, we de-identify the information you've provided to us. This means w
3. WHAT LEGAL BASES DO WE RELY ON TO PROCESS YOUR INFORMATION?
In Short: We only process your personal information when we believe it is necessary and we have a valid legal reason (i.e. legal basis) to do so under applicable law, like with your consent, to comply with laws, to provide you with services to enter into or fulfil our contractual obligations, to protect your rights, or to fulfil our legitimate business interests.
The General Data Protection Regulation (GDPR) and UK GDPR require us to explain the valid legal bases we rely on in order to process your personal information. As such, we may rely on the following legal bases to process your personal information:
Consent. We may process your information if you have given us permission (i.e. consent) to use your personal information for a specific purpose. You can withdraw your consent at any time. Learn more about withdrawing your consent below.
Legal Obligations. We may process your information where we believe it is necessary for compliance with our legal obligations, such as to cooperate with a law enforcement body or regulatory agency, exercise or defend our legal rights, or disclose your information as evidence in litigation in which we are involved.
Vital Interests. We may process your information where we believe it is necessary to protect your vital interests or the vital interests of a third party, such as situations involving potential threats to the safety of any person.
In legal terms, we are generally the 'data controller' under European data protection laws of the personal information described in this privacy notice, since we determine the means and/or purposes of the data processing we perform. This privacy notice does not apply to the personal information we process as a 'data processor' on behalf of our customers. In those situations, the customer that we provide services to and with whom we have entered into a data processing agreement is the 'data controller' responsible for your personal information, and we merely process your information on their behalf in accordance with your instructions. If you want to know more about our customers' privacy practices, you should read their privacy policies and direct any questions you have to them.
4. WHEN AND WITH WHOM DO WE SHARE YOUR PERSONAL INFORMATION?
In Short: We may share information in specific situations described in this section and/or with the following third parties.
We may need to share your personal information in the following situations:
Business Transfers. We may share or transfer your information in connection with, or during negotiations of, any merger, sale of company assets, financing, or acquisition of all or a portion of our business to another company.
We might share de-identified (ie. anonymous) and / or aggregated information with 3rd parties for research purposes. De-identified means that this information is never linked to you, and usually any information we pass on will be aggregated too – in other words, we share insights based on trends we find by gathering lots of data together.
We use a 3rd party mailing list software called Brevo.com to store your name and email only. We never store anything relating to your health on Brevo.
5. HOW LONG DO WE KEEP YOUR INFORMATION?
In Short: We keep your information for as long as necessary to fulfil the purposes outlined in this privacy notice unless otherwise required by law.
Your Personal Information
We will only keep your personal information for as long as it is necessary for the purposes set out in this privacy notice, unless a longer retention period is required or permitted by law (such as tax, accounting, or other legal requirements). No purpose in this notice will require us keeping your personal information for longer than the period of time in which users have an account with us.
When we have no ongoing legitimate business need to process your personal information, we will either delete or anonymise such information, or, if this is not possible (for example, because your personal information has been stored in backup archives), then we will securely store your personal information and isolate it from any further processing until deletion is possible.
Your Sensitive Personal Information
We only keep your identifiable sensitive personal information for as long as we need to find you a match for a 1-1 conversation. Once that conversation has taken place, we keep your information for up to 14 days so that you can provide us with feedback about how the conversation went. Then we de-identify the data, meaning we can no longer link it with you.
We continue to store de-identified and / or aggregated data for the purposes of ongoing research. De-identified data is anonymous and cannot be linked with individuals. Aggregated data means we produce insights based on collections of individual data points, but the individual data points are not available.
6. HOW DO WE KEEP YOUR INFORMATION SAFE?
In Short: We aim to protect your personal information through a system of organisational and technical security measures.
We have implemented appropriate and reasonable technical and organisational security measures designed to protect the security of any personal information we process. However, despite our safeguards and efforts to secure your information, no electronic transmission over the Internet or information storage technology can be guaranteed to be 100% secure, so we cannot promise or guarantee that hackers, cybercriminals, or other unauthorised third parties will not be able to defeat our security and improperly collect, access, steal, or modify your information. Although we will do our best to protect your personal information, transmission of personal information to and from our Services is at your own risk. You should only access the Services within a secure environment.
7. DO WE COLLECT INFORMATION FROM MINORS?
In Short: We do not knowingly collect data from or market to children under 18 years of age.
We do not knowingly solicit data from or market to children under 18 years of age. By using the Services, you represent that you are at least 18 or that you are the parent or guardian of such a minor and consent to such minor dependent’s use of the Services. If we learn that personal information from users less than 18 years of age has been collected, we will deactivate the account and take reasonable measures to promptly delete such data from our records. If you become aware of any data we may have collected from children under age 18, please contact us at alex@someonewhoknows.org.
8. WHAT ARE YOUR PRIVACY RIGHTS?
In Short: In some regions, such asthe European Economic Area (EEA) and United Kingdom (UK , you have rights that allow you greater access to and control over your personal information. You may review, change, or terminate your account at any time.
In some regions (like the EEA and UK), you have certain rights under applicable data protection laws. These may include the right (i) to request access and obtain a copy of your personal information, (ii) to request rectification or erasure; (iii) to restrict the processing of your personal information; and (iv) if applicable, to data portability. In certain circumstances, you may also have the right to object to the processing of your personal information. You can make such a request by contacting us by using the contact details provided in the section 'HOW CAN YOU CONTACT US ABOUT THIS NOTICE?' below.
We will consider and act upon any request in accordance with applicable data protection laws.
If you are located in the EEA or UK and you believe we are unlawfully processing your personal information, you also have the right to complain to your Member State data protection authorityor UK data protection authority.
If you are located in Switzerland, you may contact the Federal Data Protection and Information Commissioner.
Withdrawing your consent: If we are relying on your consent to process your personal information, you have the right to withdraw your consent at any time. You can withdraw your consent at any time by contacting us by using the contact details provided in the section 'HOW CAN YOU CONTACT US ABOUT THIS NOTICE?' below.
However, please note that this will not affect the lawfulness of the processing before its withdrawal nor, will it affect the processing of your personal information conducted in reliance on lawful processing grounds other than consent.
Opting out of marketing and promotional communications: You can unsubscribe from our marketing and promotional communications at any time by clicking on the unsubscribe link in the emails that we send, or by contacting us using the details provided in the section 'HOW CAN YOU CONTACT US ABOUT THIS NOTICE?' below. You will then be removed from the marketing lists. However, we may still communicate with you — for example, to send you service-related messages that are necessary for the administration and use of your account, to respond to service requests, or for other non-marketing purposes.
Account Information
If you would at any time like to review or change the information in your account or terminate your account, you can:
Contact us using the contact information provided.
Upon your request to terminate your account, we will deactivate or delete your account and information from our active databases. However, we may retain some information in our files to prevent fraud, troubleshoot problems, assist with any investigations, enforce our legal terms and/or comply with applicable legal requirements.
If you have questions or comments about your privacy rights, you may email us at alex@someonewhoknows.org.
9. CONTROLS FOR DO-NOT-TRACK FEATURES
Most web browsers and some mobile operating systems and mobile applications include a Do-Not-Track ('DNT') feature or setting you can activate to signal your privacy preference not to have data about your online browsing activities monitored and collected. At this stage no uniform technology standard for recognising and implementing DNT signals has been finalised. As such, we do not currently respond to DNT browser signals or any other mechanism that automatically communicates your choice not to be tracked online. If a standard for online tracking is adopted that we must follow in the future, we will inform you about that practice in a revised version of this privacy notice.
10. DO CALIFORNIA RESIDENTS HAVE SPECIFIC PRIVACY RIGHTS?
In Short: Yes, if you are a resident of California, you are granted specific rights regarding access to your personal information.
California Civil Code Section 1798.83, also known as the 'Shine The Light' law, permits our users who are California residents to request and obtain from us, once a year and free of charge, information about categories of personal information (if any) we disclosed to third parties for direct marketing purposes and the names and addresses of all third parties with which we shared personal information in the immediately preceding calendar year. If you are a California resident and would like to make such a request, please submit your request in writing to us using the contact information provided below.
If you are under 18 years of age, reside in California, and have a registered account with Services, you have the right to request removal of unwanted data that you publicly post on the Services. To request removal of such data, please contact us using the contact information provided below and include the email address associated with your account and a statement that you reside in California. We will make sure the data is not publicly displayed on the Services, but please be aware that the data may not be completely or comprehensively removed from all our systems (e.g. backups, etc.).
11. DO WE MAKE UPDATES TO THIS NOTICE?
In Short: Yes, we will update this notice as necessary to stay compliant with relevant laws.
We may update this privacy notice from time to time. The updated version will be indicated by an updated 'Revised' date and the updated version will be effective as soon as it is accessible. If we make material changes to this privacy notice, we may notify you either by prominently posting a notice of such changes or by directly sending you a notification. We encourage you to review this privacy notice frequently to be informed of how we are protecting your information.
12. HOW CAN YOU CONTACT US ABOUT THIS NOTICE?
If you have questions or comments about this notice, you may email us at alex@someonewhoknows.org or by post to:
Someone Who Knows
Marco Polostraat 265h
Amsterdam 1056DM
Noord-Holland
Netherlands
If you are a resident in the European Economic Area, the 'data controller' of your personal information is Someone Who Knows. Someone Who Knows has appointed Alex Charlton to be its representative in the EEA. You can contact them directly regarding the processing of your information bySomeone Who Knows, by email at alex@someonewhoknows.org, by visiting http://www.someonewhoknows.org, by phone at +31618392888, or by post to:
Someone Who Knows
Marco Polostraat 265h
Amsterdam 1056DM
Noord-Holland
Netherlands
13. HOW CAN YOU REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?
You have the right to request access to the personal information we collect from you, change that information, or delete it. To request to review, update, or delete your personal information, please visit: alex@someonewhoknows.org.
