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Thank you for your interest in joining EBconnect.org! Please fill out the form below to submit your request to join. Once reviewed, you will receive an email to activate your account.
EB CONNECT PRIVACY POLICY
Last updated January 5, 2024
This privacy notice for The Dystrophic Epidermolysis Bullosa Research Association of America (doing business as debra of America) ("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 ebconnect.org, or any website of ours that links to this privacy notice
- Download and use our mobile application (EB Connect), or any other application of ours that links to this privacy notice
- Engage with us in other related ways, including any sales, marketing, or events
Data Controller: debra of America, 1023 Walnut Street, Suite 100, Boulder, CO 80302
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 [email protected].
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? When you visit, use, or navigate our Services, we may process personal information depending on how you interact with us and the Services, the choices you make, and the products and features you use. Learn more about personal information you disclose to us.
Do we process any sensitive personal information? We may process sensitive personal information when necessary with your consent or as otherwise permitted by applicable law.
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.
In what situations and with which parties do we share personal information? We may share information in specific situations and with specific third parties.
How do we keep your information safe? We have organizational 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 unauthorized third parties will not be able to defeat our security and improperly collect, access, steal, or modify your information.
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.
How do you exercise your rights? The easiest way to exercise your rights is by visiting [email protected], or by contacting us. We will consider and act upon any request in accordance with applicable data protection laws.
Want to learn more about what we do with any information we collect? Review the privacy notice in full.
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. DO WE USE COOKIES AND OTHER TRACKING TECHNOLOGIES?
6. HOW LONG DO WE KEEP YOUR INFORMATION?
7. HOW DO WE KEEP YOUR INFORMATION SAFE?
8. DO WE COLLECT INFORMATION FROM MINORS?
9. WHAT ARE YOUR PRIVACY RIGHTS?
10. CONTROLS FOR DO-NOT-TRACK FEATURES
11. DO UNITED STATES RESIDENTS HAVE SPECIFIC PRIVACY RIGHTS?
12. DO OTHER REGIONS HAVE SPECIFIC PRIVACY RIGHTS?
13. DO WE MAKE UPDATES TO THIS NOTICE?
14. HOW CAN YOU CONTACT US ABOUT THIS NOTICE?
15. 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:
• names
• phone numbers
• email addresses
• passwords
• contact preferences
• contact or authentication data
• mailing addresses
Sensitive Information. When necessary, with your consent or as otherwise permitted by applicable law, we process the following categories of sensitive information:
• health data
Application Data. If you use our application(s), we also may collect the following information if you choose to provide us with access or permission:
• Mobile Device Data. We automatically collect device information (such as your mobile device ID, model, and manufacturer), operating system, version information and system configuration information, device and application identification numbers, browser type and version, hardware model Internet service provider and/or mobile carrier, and Internet Protocol (IP) address (or proxy server). If you are using our application(s), we may also collect information about the phone network associated with your mobile device, your mobile device’s operating system or platform, the type of mobile device you use, your mobile device’s unique device ID, and information about the features of our application(s) you accessed.
• Push Notifications. We may request to send you push notifications regarding your account or certain features of the application(s). If you wish to opt out from receiving these types of communications, you may turn them off in your device's settings.
This information is primarily needed to maintain the security and operation of our application(s), for troubleshooting, and for our internal analytics and reporting purposes.
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
In Short: Some information — such as your Internet Protocol (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.
The information we collect includes:
• Log and Usage Data. Log and usage data is service-related, diagnostic, usage, and performance information our servers automatically collect when you access or use our Services and which we record in log files. Depending on how you interact with us, this log data may include your IP address, device information, browser type, and settings and information about your activity in the Services (such as the date/time stamps associated with your usage, pages and files viewed, searches, and other actions you take such as which features you use), device event information (such as system activity, error reports (sometimes called "crash dumps"), and hardware settings).
• Device Data. We collect device data such as information about your computer, phone, tablet, or other device you use to access the Services. Depending on the device used, this device data may include information such as your IP address (or proxy server), device and application identification numbers, location, browser type, hardware model, Internet service provider and/or mobile carrier, operating system, and system configuration 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 deliver and facilitate delivery of services to the user. We may process your information to provide you with the requested service.
• To respond to user inquiries/offer support to users. We may process your information to respond to your inquiries and solve any potential issues you might have with the requested service.
• To send administrative information to you. We may process your information to send you details about our products and services, changes to our terms and policies, and other similar information.
• To enable user-to-user communications. We may process your information if you choose to use any of our offerings that allow for communication with another user.
• 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.
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 fulfill our contractual obligations, to protect your rights, or to fulfill our legitimate business interests.
If you are located in the EU or UK, this section applies to you.
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 by emailing [email protected]
• Performance of a Contract. We may process your personal information when we believe it is necessary to fulfill our contractual obligations to you, including providing our Services or at your request prior to entering into a contract with you.
• 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.
If you are located in Canada, this section applies to you.
We may process your information if you have given us specific permission (i.e., express consent) to use your personal information for a specific purpose, or in situations where your permission can be inferred (i.e., implied consent). You can withdraw your consent at any time by emailing [email protected]
In some exceptional cases, we may be legally permitted under applicable law to process your information without your consent, including, for example:
• If collection is clearly in the interests of an individual and consent cannot be obtained in a timely way
• For investigations and fraud detection and prevention
• For business transactions provided certain conditions are met
• If it is contained in a witness statement and the collection is necessary to assess, process, or settle an insurance claim
• For identifying injured, ill, or deceased persons and communicating with next of kin
• If we have reasonable grounds to believe an individual has been, is, or may be victim of financial abuse
• If it is reasonable to expect collection and use with consent would compromise the availability or the accuracy of the information and the collection is reasonable for purposes related to investigating a breach of an agreement or a contravention of the laws of Canada or a province
• If disclosure is required to comply with a subpoena, warrant, court order, or rules of the court relating to the production of records
• If it was produced by an individual in the course of their employment, business, or profession and the collection is consistent with the purposes for which the information was produced
• If the collection is solely for journalistic, artistic, or literary purposes
• If the information is publicly available and is specified by the regulations
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.
• Other Users. When you share personal information (for example, by posting comments, contributions, or other content to the Services) or otherwise interact with public areas of the Services, such personal information may be viewed by all users and may be publicly made available outside the Services in perpetuity. Similarly, other users will be able to view descriptions of your activity, communicate with you within our Services, and view your profile.
5. DO WE USE COOKIES AND OTHER TRACKING TECHNOLOGIES?
In Short: We may use cookies and other tracking technologies to collect and store your information.
We may use cookies and similar tracking technologies (like web beacons and pixels) to access or store information. Specific information about how we use such technologies and how you can refuse certain cookies is set out in our Cookie Notice.
6. HOW LONG DO WE KEEP YOUR INFORMATION?
In Short: We keep your information for as long as necessary to fulfill the purposes outlined in this privacy notice unless otherwise required by law.
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 anonymize 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.
7. HOW DO WE KEEP YOUR INFORMATION SAFE?
In Short: We aim to protect your personal information through a system of organizational and technical security measures.
We have implemented appropriate and reasonable technical and organizational 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 unauthorized 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.
8. 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 [email protected].
9. WHAT ARE YOUR PRIVACY RIGHTS?
In Short: In some regions, such as the European Economic Area (EEA), United Kingdom (UK), Switzerland, and Canada, 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, UK, Switzerland, and Canada), 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; (vi) if applicable, to data portability; and (vii) not to be subject to automated decision-making. 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 authority or 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, which may be express and/or implied consent depending on the applicable law, 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 or updating your preferences.
However, please note that this will not affect the lawfulness of the processing before its withdrawal nor, when applicable law allows, 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.
Cookies and similar technologies: Most Web browsers are set to accept cookies by default. If you prefer, you can usually choose to set your browser to remove cookies and to reject cookies. If you choose to remove cookies or reject cookies, this could affect certain features or services of our Services.
If you have questions or comments about your privacy rights, you may email us at [email protected].
10. 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 recognizing and implementing DNT signals has been finalized. 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.
11. DO UNITED STATES RESIDENTS HAVE SPECIFIC PRIVACY RIGHTS?
In Short: If you are a resident of California, Colorado or Virginia, you are granted specific rights regarding access to your personal information.
What categories of personal information do we collect?
We have collected the following categories of personal information in the past twelve (12) months:
Category:
A. Identifiers
Examples: Contact details, such as real name, alias, postal address, telephone or mobile contact number, unique personal identifier, online identifier, Internet Protocol address, email address, and account name
Collected: YES
B. Personal information as defined in the California Customer Records statute
Examples: Name, contact information, education, employment, employment history, and financial information
Collected: YES
C. Protected classification characteristics under state or federal law
Examples: Gender and date of birth
Collected: YES
D. Commercial information
Examples: Transaction information, purchase history, financial details, and payment information
Collected: NO
E. Biometric information
Examples: Fingerprints and voiceprints
Collected: NO
F. Internet or other similar network activity
Examples: Browsing history, search history, online behavior, interest data, and interactions with our and other websites, applications, systems, and advertisements
Collected: NO
G. Geolocation data
Examples: Device location
Collected: NO
H. Audio, electronic, visual, thermal, olfactory, or similar information
Examples: Images and audio, video or call recordings created in connection with our business activities
Collected: NO
I. Professional or employment-related information
Examples: Business contact details in order to provide you our Services at a business level or job title, work history, and professional qualifications if you apply for a job with us
Collected: YES
J. Education Information
Examples: Student records and directory information
Collected: NO
K. Inferences drawn from collected personal information
Examples: Inferences drawn from any of the collected personal information listed above to create a profile or summary about, for example, an individual’s preferences and characteristics
Collected: NO
L. Sensitive personal Information
Examples: Account login information
Collected: YES
We will use and retain the collected personal information as needed to provide the Services or for:
• Category A - As long as the user has an account with us
• Category B - As long as the user has an account with us
• Category C - As long as the user has an account with us
• Category I - As long as the user has an account with us
• Category L - As long as the user has an account with us
Category L information may be used, or disclosed to a service provider or contractor, for additional, specified purposes. You have the right to limit the use or disclosure of your sensitive personal information.
We may also collect other personal information outside of these categories through instances where you interact with us in person, online, or by phone or mail in the context of:
• Receiving help through our customer support channels;
• Participation in customer surveys or contests; and
• Facilitation in the delivery of our Services and to respond to your inquiries.
How do we use and share your personal information?
Learn about how we use your personal information in the section, "HOW DO WE PROCESS YOUR INFORMATION?"
Will your information be shared with anyone else?
We may disclose your personal information with our service providers pursuant to a written contract between us and each service provider. Learn more about how we disclose personal information to in the section, "WHEN AND WITH WHOM DO WE SHARE YOUR PERSONAL INFORMATION?"
We may use your personal information for our own business purposes, such as for undertaking internal research for technological development and demonstration. This is not considered to be "selling" of your personal information.
We have not disclosed, sold, or shared any personal information to third parties for a business or commercial purpose in the preceding twelve (12) months. We will not sell or share personal information in the future belonging to website visitors, users, and other consumers.
California Residents
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 all our systems (e.g., backups, etc.).
CCPA Privacy Notice
This section applies only to California residents. Under the California Consumer Privacy Act (CCPA), you have the rights listed below.
The California Code of Regulations defines a "residents" as:
(1) every individual who is in the State of California for other than a temporary or transitory purpose and
(2) every individual who is domiciled in the State of California who is outside the State of California for a temporary or transitory purpose
All other individuals are defined as "non-residents."
If this definition of "resident" applies to you, we must adhere to certain rights and obligations regarding your personal information.
Your rights with respect to your personal data
Right to request deletion of the data — Request to delete
You can ask for the deletion of your personal information. If you ask us to delete your personal information, we will respect your request and delete your personal information, subject to certain exceptions provided by law, such as (but not limited to) the exercise by another consumer of his or her right to free speech, our compliance requirements resulting from a legal obligation, or any processing that may be required to protect against illegal activities.
Right to be informed — Request to know
• Depending on the circumstances, you have a right to know:
• whether we collect and use your personal information;
• the categories of personal information that we collect;
• the purposes for which the collected personal information is used;
• whether we sell or share personal information to third parties;
• the categories of personal information that we sold, shared, or disclosed for a business purpose;
• the categories of third parties to whom the personal information was sold, shared, or disclosed for a business purpose;
• the business or commercial purpose for collecting, selling, or sharing personal information; and
• the specific pieces of personal information we collected about you.
In accordance with applicable law, we are not obligated to provide or delete consumer information that is de-identified in response to a consumer request or to re-identify individual data to verify a consumer request.
Right to Non-Discrimination for the Exercise of a Consumer’s Privacy Rights
We will not discriminate against you if you exercise your privacy rights.
Right to Limit Use and Disclosure of Sensitive Personal Information
If the business collects any of the following:
• social security information, drivers' licenses, state ID cards, passport numbers
• account login information
• credit card numbers, financial account information, or credentials allowing access to such accounts
• precise geolocation
• racial or ethnic origin, religious or philosophical beliefs, union membership
• the contents of email and text, unless the business is the intended recipient of the communication
• genetic data, biometric data, and health data
• data concerning sexual orientation and sex life
you have the right to direct that business to limit its use of your sensitive personal information to that use which is necessary to perform the Services.
Once a business receives your request, they are no longer allowed to use or disclose your sensitive personal information for any other purpose unless you provide consent for the use or disclosure of sensitive personal information for additional purposes.
Please note that sensitive personal information that is collected or processed without the purpose of inferring characteristics about a consumer is not covered by this right, as well as the publicly available information.
To exercise your right to limit use and disclosure of sensitive personal information, please email [email protected]
Verification process
Upon receiving your request, we will need to verify your identity to determine you are the same person about whom we have the information in our system. These verification efforts require us to ask you to provide information so that we can match it with information you have previously provided us. For instance, depending on the type of request you submit, we may ask you to provide certain information so that we can match the information you provide with the information we already have on file, or we may contact you through a communication method (e.g., phone or email) that you have previously provided to us. We may also use other verification methods as the circumstances dictate.
We will only use personal information provided in your request to verify your identity or authority to make the request. To the extent possible, we will avoid requesting additional information from you for the purposes of verification. However, if we cannot verify your identity from the information already maintained by us, we may request that you provide additional information for the purposes of verifying your identity and for security or fraud-prevention purposes. We will delete such additionally provided information as soon as we finish verifying you.
Other privacy rights
• You may object to the processing of your personal information.
• You may request correction of your personal data if it is incorrect or no longer relevant, or ask to restrict the processing of the information.
• You can designate an authorized agent to make a request under the CCPA on your behalf. We may deny a request from an authorized agent that does not submit proof that they have been validly authorized to act on your behalf in accordance with the CCPA.
• You may request to opt out from future selling or sharing of your personal information to third parties. Upon receiving an opt-out request, we will act upon the request as soon as feasibly possible, but no later than fifteen (15) days from the date of the request submission.
To exercise these rights, you can contact us by visiting debra.org, by email at [email protected], or by referring to the contact details at the bottom of this document. If you have a complaint about how we handle your data, we would like to hear from you.
Colorado Residents
This section applies only to Colorado residents. Under the Colorado Privacy Act (CPA), you have the rights listed below. However, these rights are not absolute, and in certain cases we may decline your request as permitted by law.
• Right to be informed whether or not we are processing your personal data
• Right to access your personal data
• Right to correct inaccuracies in your personal data
• Right to request deletion of your personal data
• Right to obtain a copy of the personal data you previously shared with us
• Right to opt out of the processing of your personal data if it is used for targeted advertising, the sale of personal data, or profiling in furtherance of decisions that produce legal or similarly significant effects ("profiling")
To submit a request to exercise these rights described above, please email [email protected] or visit debra.org
If we decline to take action regarding your request and you wish to appeal our decision, please email us at [email protected]. Within forty-five (45) days of receipt of an appeal, we will inform you in writing of any action taken or not taken in response to the appeal, including a written explanation of the reasons for the decisions.
Connecticut Residents
This section applies only to Connecticut residents. Under the Connecticut Data Privacy Act (CTDPA), you have the rights listed below. However, these rights are not absolute, and in certain cases we may decline your request as permitted by law.
• Right to be informed whether or not we are processing your personal data
• Right to access your personal data
• Right to correct inaccuracies in your personal data
• Right to request deletion of your personal data
• Right to obtain a copy of the personal data you previously shared with us
• Right to opt out of the processing of your personal data if it is used for targeted advertising, the sale of personal data, or profiling in furtherance of decisions that produce legal or similarly significant effects ("profiling")
To submit a request to exercise these rights described above, please email [email protected] or visit debra.org
If we decline to take action regarding your request and you wish to appeal our decision, please email us at [email protected]. Within sixty (60) days of receipt of an appeal, we will inform you in writing of any action taken or not taken in response to the appeal, including a written explanation of the reasons for the decisions.
Virginia Residents
Under the Virginia Consumer Data Protection Act (VCDPA):
"Consumer" means a natural person who is a resident of the Commonwealth acting only in an individual or household context. It does not include a natural person acting in a commercial or employment context.
"Personal data" means any information that is linked or reasonably linkable to an identified or identifiable natural person. "Personal data" does not include de-identified data or publicly available information.
"Sale of personal data" means the exchange of personal data for monetary consideration.
If this definition of "consumer" applies to you, we must adhere to certain rights and obligations regarding your personal data.
Your rights with respect to your personal data
• Right to be informed whether or not we are processing your personal data
• Right to access your personal data
• Right to correct inaccuracies in your personal data
• Right to request deletion of your personal data
• Right to obtain a copy of the personal data you previously shared with us
• Right to opt out of the processing of your personal data if it is used for targeted advertising, the sale of personal data, or profiling in furtherance of decisions that produce legal or similarly significant effects ("profiling")
Exercise your rights provided under the Virginia VCDPA
You may contact us by email at [email protected] or visit debra.org
If you are using an authorized agent to exercise your rights, we may deny a request if the authorized agent does not submit proof that they have been validly authorized to act on your behalf.
Verification process
We may request that you provide additional information reasonably necessary to verify you and your consumer's request. If you submit the request through an authorized agent, we may need to collect additional information to verify your identity before processing your request.
Upon receiving your request, we will respond without undue delay, but in all cases, within forty-five (45) days of receipt. The response period may be extended once by forty-five (45) additional days when reasonably necessary. We will inform you of any such extension within the initial 45-day response period, together with the reason for the extension.
Right to appeal
If we decline to take action regarding your request, we will inform you of our decision and reasoning behind it. If you wish to appeal our decision, please email us at [email protected]. Within sixty (60) days of receipt of an appeal, we will inform you in writing of any action taken or not taken in response to the appeal, including a written explanation of the reasons for the decisions. If your appeal is denied, you may contact the Attorney General to submit a complaint.
12. DO OTHER REGIONS HAVE SPECIFIC PRIVACY RIGHTS?
In Short: You may have additional rights based on the country you reside in.
Australia and New Zealand
We collect and process your personal information under the obligations and conditions set by Australia's Privacy Act 1988 and New Zealand's Privacy Act 2020 (Privacy Act).
This privacy notice satisfies the notice requirements defined in both Privacy Acts, in particular: what personal information we collect from you, from which sources, for which purposes, and other recipients of your personal information.
If you do not wish to provide the personal information necessary to fulfill their applicable purpose, it may affect our ability to provide our services, in particular:
• offer you the products or services that you want
• respond to or help with your requests
• manage your account with us
• confirm your identity and protect your account
At any time, you have the right to request access to or correction 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 REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?"
If you believe we are unlawfully processing your personal information, you have the right to submit a complaint about a breach of the Australian Privacy Principles to the Office of the Australian Information Commissioner and a breach of New Zealand's Privacy Principles to the Office of New Zealand Privacy Commissioner.
Republic of South Africa
At any time, you have the right to request access to or correction 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 REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?"
If you are unsatisfied with the manner in which we address any complaint with regard to our processing of personal information, you can contact the office of the regulator, the details of which are:
The Information Regulator (South Africa)
General enquiries: [email protected]
Complaints (complete POPIA/PAIA form 5): [email protected] & [email protected]
13. DO WE MAKE UPDATES TO THIS NOTICE?
In Short: Yes, we will update this notice as necessary to stay compliant with relevant laws.
debra of America reserves the right to change the privacy policy as we may deem necessary from time to time or as required by law. Any changes will be immediately posted on the website and you are deemed to have accepted the terms of the policy on your first use of the website following the alterations.
14. HOW CAN YOU CONTACT US ABOUT THIS NOTICE?
If you have questions or comments about this notice, you may email us at [email protected] or contact us by post at:
debr aof America
1023 Walnut Street, Suite 100
Boulder, CO 80302
United States
15. HOW CAN YOU REVIEW, UPDATE, OR DELETE THE DATA WE COLLECT FROM YOU?
Based on the applicable laws of your country, you may 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: [email protected].