LHON Collective Privacy Center
We value your privacy and trust.
The LHON Collective Privacy Center makes it easy to find information on privacy topics, including your choices about how we collect and use your information.
Table of Contents
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LHON Collective Privacy Choices
Last updated: June 3, 2026
Your data. Your choices.
Direct Outreach Communications from LHON Collective
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Tell us to stop sending you emails by clicking the unsubscribe link included at the bottom of LHON Collective’s direct outreach emails.
Please note that even when you exercise these choices, you may still receive communications from LHON Collective in the form of “transactional” emails relating to normal business operations. For example, we may email you to inform you that a donation from you has been received.
LHON Collective website preferences
LHON Collective uses cookies and similar technologies to analyze your use of the LHON Collective website so that we can improve it and tailor the website and communications to your likely interests.
Note about cookie-based preferences: Many of the privacy preferences described on this page work by placing a cookie on your browser. Therefore, your browser must be configured to accept cookies for your preference to take effect. If you delete or clear your cookies, or if you change web browsers, you will need to set your preferences again.
Cookies and Similar Technologies
Last updated: June 3, 2026
Cookies
Cookies are small text files stored by your web browser when you use websites. You can control how websites use cookies by configuring your browser's privacy settings (please refer to your browser's help function to learn more about cookie controls). Note that if you disable cookies entirely, the LHON Collective website may not function properly.
LHON Collective and the companies that provide services to our end users use cookies in several ways, such as:
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Providing you with the LHON Collective website that you use
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Remembering your preferences or where you left off in your use of the LHON Collective website
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Measuring your use of the LHON Collective website so that we can improve it, tailor it to your likely interests, and conduct market research (learn more or opt out)
Technologies similar to cookies
Technically speaking, cookies are called “HTTP cookies.” There are other technologies that can be used for similar purposes, such as HTML5 Local Storage and local shared objects (LSOs). We may use HTML5 Local Storage, LSOs, and similar technologies for authenticating you, keeping track of information you have provided to us, and remembering your preferences (see bullet points above). When you are using an LHON Collective application offline, we may store information related to how you used that website on your device and then transfer it to our servers the next time you connect online to our service.
Web beacons and embedded scripts
Web beacons and embedded scripts are other technologies that we use in our website, as well as in some of our emails. Web beacons (or “tags”) are bits of programming code included in web pages, emails, and ads that notify LHON Collective (or the companies that help us conduct our business) when those web pages or emails have been viewed or clicked on.
Embedded scripts are bits of programming code included within some of our web pages that measure how you use those web pages, such as which links you click. We use this information to improve our website, tailor our website to your likely interests, conduct market research, and for anti-fraud monitoring purposes. You may be able to turn off scripting functionality, such as JavaScript, within your browser (please refer to your browser's help function). Note that if you disable scripting functionality, some LHON Collective websites may not function properly.
GDPR Privacy
Last updated: June 3, 2026
What does this section cover?
This page supplements our Privacy Policy by explaining your privacy rights if you are a resident within the European Union and provides certain mandated disclosures about our treatment of personal information, and includes:
LHON Collective and the companies that provide services to our end users use cookies in several ways, such as:
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Legal Basis for Processing Personal Data under GDPR
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Conditions under which LHON Collective may process Personal Data
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Legal obligations under which processing Personal Data is necessary
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Your Rights under the GDPR
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Exercising of Your GDPR Data Protection Rights
Legal Basis for Processing Personal Data under GDPR
The General Data Protection Regulation (GDPR) is a European Union (EU) law that governs how organizations, both within and outside the EU, handle the personal data of EU residents, aiming to protect their privacy and give them more control over their data.
LHON Collective may process Personal Data under the following conditions:
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Consent: You have given your consent for processing Personal Data for one or more specific purposes.
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Performance of a contract: Provision of Personal Data is necessary for the performance of an agreement with you and/or for any pre-contractual obligations thereof.
Legal obligations: Processing Personal Data is necessary for compliance with a legal obligation to which LHON Collective is subject.
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Vital interests: Processing Personal Data is necessary in order to protect your vital interests or of another natural person.
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Public interests: Processing Personal Data is related to a task that is carried out in the public interest or in the exercise of official authority vested in LHON Collective.
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Legitimate Interests: Processing Personal Data is necessary for the purposes of the legitimate interests pursued by LHON Collective.
In any case, LHON Collective will gladly help to clarify the specific legal basis that applies to the processing, and in particular, whether the provision of Personal Data is a statutory or contractual requirement, or a requirement necessary to enter into a contract.
Your Rights under the GDPR
LHON Collective undertakes to respect the confidentiality of your Personal Data and to guarantee you can exercise your rights.
You have the right under this Privacy Policy, and by law if you are within the EU, to:
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Request access to Your Personal Data. The right to access, update, or delete the information LHON Collective has on you. Whenever made possible, you can access, update, or request deletion of your Personal Data by contacting LHON Collective at connect@lhon.org to assist you. This also enables you to receive a copy of the Personal Data LHON Collective holds about you.
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Request correction of the Personal Data that LHON Collective holds about you. You have the right to have any incomplete or inaccurate information LHON Collective holds about you corrected.
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Object to the processing of your Personal Data. This right exists where LHON Collective is relying on a legitimate interest as the legal basis for its processing, and there is something about your particular situation that makes you want to object to our processing of your Personal Data on this ground. You also have the right to object where LHON Collective is processing your Personal Data for direct marketing purposes.
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Request erasure of your Personal Data. You have the right to ask LHON Collective to delete or remove Personal Data when there is no good reason for LHON Collective to continue processing it.
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Request the transfer of your Personal Data. We will provide to you, or to a third-party you have chosen, your Personal Data in a structured, commonly used, machine-readable format. Please note that this right only applies to automated information which you initially provided consent for LHON Collective to use, or where LHON Collective used the information to perform a contract with you.
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Withdraw your consent. You have the right to withdraw your consent to the use of your Personal Data. If you withdraw your consent, LHON Collective may not be able to provide you with access to certain specific functionalities of the service.
Exercising of Your GDPR Data Protection Rights
You may exercise your rights of access, rectification, cancellation, and opposition by contacting LHON Collective. Please note that we may ask you to verify your identity before responding to such requests. If you make a request, LHON Collective will try our best to respond to you as soon as possible.
You have the right to complain to a Data Protection Authority about LHON Collective’s collection and use of your Personal Data. For more information, if you are in the European Economic Area (EEA), please contact your local data protection authority in the EEA.
Additional US State Privacy Rights
Last updated: June 3, 2026
What does this section cover?
Some states in the US have passed state-specific privacy laws. This page supplements our Privacy Policy by explaining your privacy rights if you are a resident in one of these states, provides certain mandated disclosures about our treatment of personal information, and includes:
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Colorado, Connecticut, Utah, and Virginia specific disclosures and rights
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California-specific disclosures and rights
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What personal information do we sell or share
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What rights you have
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Opt-outs for the sale or sharing of personal information
Colorado, Connecticut, Utah, and Virginia
If you are a resident of Colorado, Connecticut, Utah, or Virginia, we have certain obligations, and you have certain rights with respect to your personal information, including:
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Right to confirm whether the controller is processing the consumer’s personal information and the right to access such information
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Right to correct inaccuracies in personal information
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Right to delete personal information
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Right of data portability
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Right to opt out from targeted advertising
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Right to opt out from the sale of personal information
In certain states, you also have the right to opt out from profiling in furtherance of decisions that produce legal or similarly significant effects on the consumer (such as Virginia, Colorado, and Connecticut) and appeal a decision regarding a request to exercise your rights.
If you wish to exercise one or more of these rights, please review the “What rights do I have regarding my personal information and how can I exercise these?” section in the LHON Collective Privacy Policy. If you would like to opt out of targeted advertising or the sale of personal information, please see the instructions below.
California
In addition to the information described in our Privacy Policy, the California Consumer Privacy Act of 2018 (as amended by the California Privacy Rights Act of 2021) (“CCPA”) also requires us to provide California consumers with some additional information related to how LHON Collective collects, uses, retains, and discloses personal information as well as describe additional rights, which are summarized below.
California Privacy Policy Disclosures
We collect, use, disclose, sell, share, and retain personal information as further described in our Privacy Policy and summarized below.
Personal Information We Collect
In the preceding 12 months, we have collected the following categories of personal information, each as further described in our Privacy Policy:
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Identifiers and contact information, such as:
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Name
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Email address
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Telephone number
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Postal or Physical Address
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Country
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Content of and information provided through follow-up surveys and other communications (e.g., stored content of your correspondence with us via our website, phone, and video calls, emails, and other channels)
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Types of Services of interest
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Professional, educational, or other demographic information, such as:
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Date of birth
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Company or school name
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Title
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Occupation
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Job function
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Expertise
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Company details, such as the size, industry, and other information about the company where a user may work (when the user has provided the company name)
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Analytics or other electronic network activity, such as:
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IP address
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Browser
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Sources of Personal Information We Collect
We collect personal information from the following categories of sources, which are more fully described in our Privacy Policy:
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Personal information you provide directly to us, such as on a form, via email or telephone, etc.
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Personal information we automatically or programmatically collect or generate from your access to and use of LHON Collective website or services
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Personal information we infer or generate from your access to and use of LHON Collective’s website or services, such as your approximate location (such as your IP address), likely preferences or other characteristics
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Personal information we obtain or receive from other sources, including:
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Data brokers and aggregators from which we obtain information to supplement the personal information we collect.
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Third-party partners, such as third-party applications and services, including social networks, you choose to connect or interact with through our services
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Co-branding or marketing partners, such as companies with which we offer co-branded services or events, or engage in joint marketing activities
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Service providers that collect or provide data in connection with the work they do on our behalf
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Publicly available sources, such as open government databases.
Business or Commercial Purposes for Collecting Personal Information
We use the personal information we collect for purposes further described in our Privacy Policy or otherwise disclosed to you. For example, we use personal information for the following purposes:
Service delivery
To provide and deliver our services, including troubleshooting, improving, and personalizing those services.
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
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Biometric Information
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Sensitive Personal Information
Business operations
o operate our business, such as billing, accounting, payment processing, improve our internal operations, secure our systems and physical spaces, authenticate or validate your identity, detect fraudulent, deceptive, or illegal activity, and meet our legal obligations.
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
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Biometric Information
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Sensitive Personal Information
Product improvement, analysis, development, and research
To improve and develop new services or features, diagnose issues, analyze your use and measure effectiveness of our Services to better understand how they are being used so we can improve them and engage and retain users, and conduct research.
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
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Biometric Information
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Sensitive Personal Information
Personalization
To understand you and your preferences to enhance your experience and enjoyment using our Services.
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
Support
To provide support and respond to your questions.
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
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Communications
To send you information, including confirmations, invoices, technical notices, updates, security alerts, and support and administrative messages.
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
Marketing
To communicate with you about new services, upcoming events, and other information about our services (see the Your Privacy Choices section for how to change your preferences for promotional communications).
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
Advertising
To display advertising to you (see the Cookies section for information about personalized advertising and your advertising choices).
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
Event Planning and Management
To register you for events, tailor programming to your likely interests, validate your identity, provide accommodations for specific needs upon request, and provide a secure environment for our events.
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
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Biometric Information
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Sensitive Personal Information
We combine data we collect from different sources for these purposes and to give you a more seamless, consistent, and personalized experience.
Categories of Personal Information Disclosed for a Business Purpose in the Preceding 12 Months
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
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Sensitive Personal Information
For more information on the categories of third parties with whom we disclose personal information and the specific business or commercial purposes for such disclosures, please review the “Does LHON Collective disclose my personal information” section of our Privacy Policy.
Categories of Personal Information Shared in the Preceding 12 Months
Software as a Service (SaaS) provider: Categories of Personal Information Shared
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Identifiers and Contact Information
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Commercial and Transaction Information
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Professional, Education, or other Demographic Information
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Analytics or other Electronic Network Activity
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Inferred Information
Purpose for Disclosure - to centralize client data, streamline processes, manage marketing campaigns, and improve engagement.
Sensitive Personal Information
LHON Collective uses and discloses sensitive personal information for the limited purposes permitted under CCPA and not for the purposes of inferring characteristics about a consumer.
Retention and Deletion
Please review the “How long does LHON Collective retain my information” section of our Privacy Policy for more information about how long LHON Collective retains personal information.
California Privacy Rights
California consumers have certain rights with respect to their personal information. These rights include the following:
1. Right to opt out of “selling” or “sharing” certain Personal Information​
You have a right to opt out from future “sales” or “sharing” of personal information. CCPA requires us to describe the categories of personal information we sell to or share with third parties and how to opt out of future sales or sharing. The CCPA defines personal information to include internet or other electronic network activity information, which includes identifiers, such as IP addresses, cookie IDs, and mobile IDs. The law also defines a “sale” or “share” broadly to include simply making data available to third parties in some cases.
To opt out of sharing and selling for purposes of cross-context behavioral advertising, you can:
Review your preferences and opt out of advertising cookies and other technologies used for browser-based cross-context behavioral advertising. Note that you will need to opt out of each browser that you use to access the LHON Collective website. Cookie settings
2. Right to Know or Request Categories of Personal Information
You have a right to request that we disclose to you the personal information we have collected about you. You also have a right to request additional information about our collection, use, or disclosure of such personal information such as a list of the categories of personal information collected about you, and other related information such as the source of the information, categories of information shared to third parties, and the purpose for such sharing. LHON Collective has provided this information in the Privacy Policy.
3. Right to Correct
You have a right to request correction of inaccurate personal information.
4. Right to Request Deletion
You also have a right to request that we delete personal information under certain circumstances, subject to certain exceptions.
5. Right to Designate an Authorized Agent
You may designate an authorized agent to exercise some of your rights; however, in order to help protect the security of your personal information, the authorized agent must follow the same authentication procedures that are required if you exercise your rights without using an agent. LHON Collective will verify requests made through authorized agents to help ensure the safety of your account and to comply with our policies and procedures.
