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Last updated June 03, 2020
Thank you for choosing to be part of our patient registry community at the Kleine-Levin Syndrome Foundation, hosted and managed by Beneufit, Inc. (“
”, or “
”). We are committed to protecting your personal information and your right to privacy. If you have any questions or concerns about our policy, or our practices with regards to your personal information, please contact us at
The sole purpose of this Kleine-Levin Syndrome Foundation patient registry is to advance the understanding of Kleine-Levin Syndrome. A more detailed description of the rights, risks and benefits of participating in the registry is located in the informed consent document, accessible at the beginning of the registration process.
When you visit our patient registry at
TABLE OF CONTENTS
WHAT INFORMATION DO WE COLLECT?
HOW DO WE USE YOUR INFORMATION?
WILL YOUR INFORMATION BE SHARED WITH ANYONE?
HOW LONG DO WE KEEP YOUR INFORMATION?
HOW DO WE KEEP YOUR INFORMATION SAFE?
DO WE COLLECT INFORMATION FROM MINORS?
WHAT ARE YOUR PRIVACY RIGHTS?
CONTROLS FOR DO-NOT-TRACK FEATURES
DO CALIFORNIA RESIDENTS HAVE SPECIFIC PRIVACY RIGHTS?
DO WE MAKE UPDATES TO THIS POLICY?
HOW CAN YOU CONTACT US ABOUT THIS POLICY?
1.WHAT INFORMATION DO WE COLLECT?
We collect personal information that you voluntarily provide to us when registering at the Services, expressing an interest in obtaining information about us or our products and services, when participating in activities on the Services or otherwise contacting us. 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 can include the following: Personal Information Provided by You. We collect first name, last name, email addresses phone numbers and other similar data, data about demographics, healthcare professionals, genetics, disease history, disease symptoms, medications and their effect on symptoms and side-effecgs and other similar data. 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. Information automatically collected. Some information — such as IP address and/or browser and device characteristics — is collected automatically when you visit our Services. We automatically collect certain information when you visit, use or navigate the Services. This information does not reveal your specific identity (like your name or contact information) but may include device and usage information, such as your IP address, browser and device characteristics, operating system, language preferences, referring URLs, device name, country, location, information about how and when you use our Services and other technical information. This information is primarily needed to maintain the security and operation of our Services, and for our internal analytics and reporting purposes. Like many businesses, we also collect information through cookies and similar technologies.
2. HOW DO WE USE YOUR INFORMATION?
We use personal information collected via our Services for a variety of business purposes described below. We process your personal information for these purposes in reliance on our legitimate business interests, in order to enter into or perform a contract with you, with your consent, and/or for compliance with our legal obligations. We indicate the specific processing grounds we rely on next to each purpose listed below. Below are some definitions that will help you understand the roles and responsibilities of Beneufit, Inc.: “data controller” means a person who (either alone or jointly or in common with other persons) determines the purposes for which and the manner in which any personal information are, or are to be used. “data processor”, in relation to personal information, means any person (other than an employee of the data controller) who processes the data on behalf of the data controller. If you provide the data and the instructions, then you are the data controller and Beneufit, Inc. is the data processor. If we determine the purposes for which we collect and use your personal information, then we are the Controller. To send administrative information to you. We may use your personal information to send you product, service and new feature information and/or information about changes to our terms, conditions, and policies. Request Feedback. We may use your information to request feedback and to contact you about your use of our Services. To protect our Services. We may use your information as part of our efforts to keep our Services safe and secure (for example, for fraud monitoring and prevention). To manage user accounts. We may use your information for the purposes of managing our account and keeping it in working order. To respond to user inquiries/offer support to users. We may use your information to respond to your inquiries and solve any potential issues you might have with the use of our Services.
3. WILL YOUR INFORMATION BE SHARED WITH ANYONE?
We only share information with your consent, to comply with laws, to provide you with services, to protect your rights, or to fulfill business obligations. We may process or share data based on the following legal basis: Consent: We may process your data if you have given us specific consent to use your personal information in a specific purpose. Legitimate Interests: We may process your data when it is reasonably necessary to achieve our legitimate business interests. Performance of a Contract: Where we have entered into a contract with you, we may process your personal information to fulfill the terms of our contract. Legal Obligations: We may disclose your information where we are legally required to do so in order to comply with applicable law, governmental requests, a judicial proceeding, court order, or legal process, such as in response to a court order or a subpoena (including in response to public authorities to meet national security or law enforcement requirements). Vital Interests: We may disclose your information where we believe it is necessary to investigate, prevent, or take action regarding potential violations of our policies, suspected fraud, situations involving potential threats to the safety of any person and illegal activities, or as evidence in litigation in which we are involved. More specifically, we may need to process your data or 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.
5. HOW LONG DO WE KEEP YOUR INFORMATION?
6. HOW DO WE KEEP YOUR INFORMATION SAFE?
We have implemented appropriate technical and organizational security measures designed to protect the security of any personal information we process. However, please also remember that we cannot guarantee that the internet itself is 100% secure. 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?
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 have collected from children under age 18, please contact us at
8. WHAT ARE YOUR PRIVACY RIGHTS?
In some regions (like the European Economic Area), 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. To make such a request, please use the
provided below. We will consider and act upon any request in accordance with applicable data protection laws. If we are relying on your consent to process your personal information, you have the right to withdraw your consent at any time. Please note however that this will not affect the lawfulness of the processing before its withdrawal. If you are resident in the European Economic Area and you believe we are unlawfully processing your personal information, you also have the right to complain to your local data protection supervisory authority. You can find their contact details here:
. If you have questions or comments about your privacy rights, you may email us at
Account Information - If you would at any time like to review or change the information in your account you can: Log into your account settings at
and update your user account. Upon your request to terminate your account contact the Kleine-Levin Syndrome Foundation patient registry administrators at
or by using the details provided below. You will then be removed from the marketing email list – however, we will still need to send you service-related emails that are necessary for the administration and use of your account. To otherwise opt-out, you may: Contact us using the contact information provided.
9. DATA BREACH
A privacy breach occurs when there is unauthorized access to or collection, use, disclosure or disposal of personal information. You will be notified about data breaches when Beneufit, Inc. believes you are likely to be at risk or serious harm. For example, a data breach may be likely to result in serious financial harm or harm to your mental or physical well-being. In the event that Beneufit, Inc. becomes aware of a security breach which has resulted or may result in unauthorized access, use or disclosure of personal information Beneufit, Inc. will promptly investigate the matter and notify the applicable Supervisory Authority not later than 72 hours after having become aware of it, unless the personal data breach is unlikely to result in a risk to the rights and freedoms of natural persons.
10. CONTROLS FOR DO-NOT-TRACK FEATURES
11. DO CALIFORNIA RESIDENTS HAVE SPECIFIC PRIVACY RIGHTS?
Although we do not disclose any Personally identifiable information (PII) to any third parties for any reason, 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 the 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 our systems.
12. DO WE MAKE UPDATES TO THIS POLICY?
13. HOW CAN YOU CONTACT US ABOUT THIS POLICY?
If you have questions or comments about this policy, you may contact our Data Protection Officer (DPO), Jeff Broderick, by email at firstname.lastname@example.org, or by post to: Beneufit, Inc. PO Box 401 Kentfield, CA 94914 United States If you are a resident in the European Economic Area, the "data controller" of your personal information is Beneufit, Inc. Beneufit, Inc. has appointed Jeff Broderick to be its representative in the EEA. You can contact them directly regarding the processing of your information by Beneufit, Inc., by email at
, by visiting
, or by post to: Beneufit, Inc. PO Box 401 Kentfield, CA 94914 United States.
HOW CAN YOU REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?
Based on the laws of some countries, you may have the right to request access to the personal information we collect from you, change that information, or delete it in some circumstances. To request to review, update, or delete your personal information, please submit a request form by emailing
. We will respond to your request within 30 days.