top of page

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

LHON Collective Privacy Choices

Last updated: March 14, 2025

We collect information about you and how you engage with us to provide you with more relevant experiences and marketing messages based on your likely interests. Here is how you can control your information:

Your data. Your choices.

Direct Outreach Communications from LHON Collective

  • 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: March 14, 2025

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:

  • Providing you with the LHON Collective website that you use

  • Remembering your preferences or where you left off in your use of the LHON Collective website

  • 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.

Top of Page

GDPR Privacy

Last updated: March 18, 2025

What does this info 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:

  • Legal Basis for Processing Personal Data under GDPR

  • Conditions under which LHON Collective may process Personal Data

  • Legal obligations under which processing Personal Data is necessary

  • Your Rights under the GDPR

  • 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:

  • Consent: You have given your consent for processing Personal Data for one or more specific purposes.

  • 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.

  • Vital interests: Processing Personal Data is necessary in order to protect your vital interests or of another natural person.

  • 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.

  • 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:

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

Top of Page

Non-Discrimination Policy

Last updated: March 28, 2025

LHON Collective is committed to creating and maintaining a workplace in which everyone has an opportunity to participate and contribute to the success of the organization and are valued for their skills, experience, and unique perspectives. 

LHON Collective does not and shall not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military/veteran status, in any of its activities or operations. These activities include, but are not limited to, hiring and firing of staff, selection of volunteers and vendors, and provision of services. We are committed to providing an inclusive and welcoming environment for all members of our staff, volunteers, subcontractors, vendors, and clients.

LHON Collective is an equal opportunity employer. We will not discriminate and will take affirmative action measures to ensure against discrimination in employment, recruitment, advertisements for employment, compensation, termination, upgrading, promotions, and other conditions of employment against any employee or job applicant on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, or military/veteran status.

This work is adapted from the STXBP1 Foundation.

Top of Page

LHON Collective Fundraising Event
Program Policies and Guidelines Overview

Last updated: March 28, 2025

LHON Collective is extremely grateful to the many individuals and organizations who wish to organize events and campaigns to support research to help find a cure for LHON.

REASON PERMISSION REQUIRED TO USE LHON COLLECTIVE NAME, LOGO, AND TAGLINE

The LHON Collective Name, Logo and Tagline are legally protected trademarks owned by LHON Collective nonprofit entity. As the owner of the LHON Collective Name, Logo and Tagline, LHON Collective has the legal responsibility to protect its trademarks, including all of their various forms and uses. To maintain the credibility and integrity of the LHON Collective Name, Logo and Tagline as trademarks, LHON Collective must protect them from inappropriate use. These guidelines do not give presumptive approval for using the LHON Collective trademarks.

FUNDRAISING EVENT/CAMPAIGN OVERVIEW 

An LHON Collective Supporter’s Fundraising Event/Campaign (“Fundraiser”) is an event or promotion organized, developed and executed for the purpose of raising money to advance LHON Collective’s mission by an individual, business or organization (“Organizer”), which is non-affiliated with LHON Collective. LHON Collective has no fiduciary responsibility and little or no staff involvement in these Fundraisers, where the net proceeds shall be delivered to LHON Collective for the benefit of LHON Collective. With Organizer’s acceptance of (and compliance with) these Program Policies & Guidelines, Organizer of a Fundraiser has the opportunity to utilize the LHON Collective Fundraising Toolkit for Fundraiser promotion and related online fundraising, and use the LHON Collective Logo in connection with the Fundraiser. 

Top of Page

LHON Collective Fundraising Event
Program Policy and Guidelines

Last updated: March 28, 2025

Event Names

All promotional materials and public communications must clearly state LHON Collective is the beneficiary of the Fundraiser, and may not state or imply that Organizer is an employee, agent, subsidiary, or affiliate of LHON Collective, nor may such materials or communications state or imply that the Fundraiser is organized, hosted or sponsored by LHON Collective or that LHON Collective is other than the beneficiary of the Fundraiser. For example, rather than “LHON Collective [Fundraiser Name]”, the Fundraiser should be identified as “The [Fundraiser Name] To Benefit LHON Collective.”

Right and Wrong Ways to Use LHON Collective Trademarks

  • The LHON Collective trademarks must be used primarily for fundraising for Leber Hereditary Optic Neuropathy (LHON).

  • Any and all proceeds must go to LHON Collective.

  • It must be stated that your event is being held “in partnership” with LHON Collective or that your event is “partnering with” LHON Collective.

  • The LHON Collective trademarks may not be used in any way or manner that implies the endorsement of any person, product, program, or service.

  • No one may manufacture or sell a product containing or featuring the LHON Collective trademarks. If you wish to create a product as a fundraiser for us, please contact us directly.

  • Anyone who receives written permission to use the LHON Collective trademarks incurs an obligation and fiduciary duty to maintain the integrity and consistency of the trademarks. The trademarks may not be altered in any way.

  • LHON Collective prohibits doing any business under the LHON Collective Name. No contracts may be signed under the LHON Collective Name. LHON Collective is not responsible for any contract disputes and is not liable for any damages, thefts, or injuries at your event.

Correct Usage

“The Neighborhood Walk-a-thon is partnering with LHON Collective to raise funds for LHON research. All funds will go to LHON Collective.”

 

“The Neighborhood Walk-a-thon is being held in partnership with LHON Collective to raise funds for LHON research. All funds will go to LHON Collective.”

Incorrect Usage

“LHON Collective is sponsoring our Neighborhood Walk-a-thon. A portion of the proceeds will go to LHON Collective.”

 

“The Neighborhood Walk-a-thon is partnering with LHON Collective to raise funds for LHON research. A portion of the proceeds will go to the LHON.”

LHON Collective Staff & Volunteers

LHON Collective staff and volunteers are fully deployed on strategic programs to raise funds to support the mission of LHON Collective. As a result, LHON Collective is unable to provide staff or volunteers as in-person support for fundraising events by Organizers. 

Liability Insurance 

LHON Collective insurance does not extend to or cover independent LHON Collective Supporters’ Fundraising Events/Campaigns. It is recommended that Organizers read the fine print of agreements they are signing when holding fundraisers at various locations—at times liability insurance is mentioned in the agreement and that will be at the responsibility of the Fundraiser Organizer, not LHON Collective. We recommend that you seek independent insurance advice, if appropriate. 

Conduct & Decorum 

Each Fundraiser shall be administered in a manner that reflects positively on the image of LHON Collective. No conduct which is unlawful or deemed offensive by LHON Collective shall be associated with any Fundraiser. LHON Collective reserves the right to revoke Organizer’s permission to use the LHON Collective name, the LHON Collective Logo, the LHON Collective Tagline, and fundraising tools for any Fundraiser it deems offensive or in violation of these Program Policies & Guidelines.

Use of the LHON Collective trademarks without approval or in an inappropriate manner may result in legal action. Upon notice from LHON Collective, Organizer agrees to discontinue use of the trademarks.

We encourage event Organizers to conduct events benefiting LHON Collective in the safest manner possible and to protect the health and safety of all those attending or involved. In matters of health and safety (such as the COVID 19 pandemic) it is recommended that Organizers follow the science and data to make appropriate decisions on holding events based on the guidance of federal, state and local public health officials. 

Accounting & Banking

  • Organizer and/or individual donors of the fundraising event shall donate to LHON Collective all proceeds from the Fundraiser, net of direct costs. Under no circumstances can a Fundraiser’s expenses flow through LHON Collective's accounting books.

  • Only the net revenue (revenue less expenses) will be accepted by LHON Collective. The organizer may not use LHON Collective’s taxpayer identification number or assert exemption from taxes under LHON Collective’s Name.

  • All donations submitted through LHON Collective’s online fundraising page or mailed directly to LHON Collective will be acknowledged by LHON Collective with a tax-deductible receipt, assuming donor information is supplied.

In-kind Sponsorship

LHON Collective cannot solicit in-kind sponsors for independent LHON Collective Supporters’ Fundraising Events/Campaigns. In-kind sponsorship is defined as a donation of a product or service, such as printing of materials or providing custom t-shirts. Additionally, the value of in-kind sponsors’ products or services can be recognized as part of the total event revenue, but not in the event’s cash donation to LHON Collective. Please contact LHON Collective for additional information. 

Safety of Participants in Events

All in-person fundraising events should be conducted with the safety of the participants in mind, and special attention must be paid to the safety of any minor participating in the event. LHON Collective is not responsible for the safety of participants in the Fundraiser by the Organizer. If any event poses any potential risk to the health or safety of a participant, e.g., walkathon, marathon, triathlon, the Organizer shall obtain a written and signed waiver of liability from each participant as a condition of participating in the event. The waiver must release LHON Collective from any claim for liability resulting from the individual’s participation in the event. Sample waiver language will be provided upon request.

Cause Related Marketing & Product Endorsement 

For-profit entities or individuals that wish to fundraise for LHON Collective through their trade or business by offering LHON Collective a percentage of sales or revenue from products or services must first secure LHON Collective’s written approval before proceeding. Organizer shall not use the LHON Collective Name and/or the LHON Collective Logo in connection with the sale or promotion of any products or services or for any commercial purposes unless pre-authorized by LHON Collective in writing. Organizer will not represent or imply that LHON Collective endorses or sanctions any product or service of Organizer or of any third party.

Usage of LHON Collective name and LHON Collective Logo

LHON Collective has strict guidelines around the usage of our Logo for fundraising activities. Permission to use the LHON Collective Logo is granted on a case-by-case basis. Organizers of fundraisers must request to use our Logo by sending an e-mail  with the items answered at the bottom of this form. Staff will respond to all requests within 10 business days. 

All promotional materials and public communications must clearly state that LHON Collective is the beneficiary of the Fundraiser and may not state or imply that Organizer is an employee, agent, subsidiary, or affiliate of LHON Collective. These materials or communications should also not state or imply that the Fundraiser is organized, hosted or sponsored by LHON Collective or that LHON Collective is anything but the beneficiary of the Fundraiser. 

LHON Collective grants to Organizer a non-exclusive, non-transferable permission to use and display the LHON Collective Name and the LHON Collective Logo in connection with Fundraisers authorized hereunder, subject to the following terms and conditions:

  • The Organizer will use the LHON Collective Name and the LHON Collective Logo solely to organize, promote, host, and present the Fundraiser in accordance with these Program Policies and guidelines. 

  • The Tagline and the LHON Collective Logo may be used in connection with publicizing the Fundraiser. No other use of the LHON Collective Name or any other LHON Collective Trademarks, Slogans, Logos, or design may be used in connection with the Fundraiser unless LHON Collective makes them available to the Organizer specifically for use in connection with the Fundraiser.

  • Organizer shall not make any alterations to the LHON Collective Logo or adapt the LHON Collective Logo as part of another symbol or mark. Organizer agrees not to do, omit to do, or permit to be done, any act which will or may dilute or tarnish or bring into disrepute the reputation of or goodwill associated with the LHON Collective Name or the LHON Collective Logo.

  • The organizer is responsible for the costs, logistics, and liability associated with organizing, promoting, and producing the Fundraiser.

  • Organizer shall not grant permission to any other person to use the LHON Collective Name and/or the LHON Collective Logo.

  • Organizer agrees to comply with all laws in connection with organizing, promoting and hosting/presenting any Fundraiser where the LHON Collective Name and/or Logo will be displayed or used by Organizer.

  • LHON Collective reserves the right to terminate Organizer’s right to use the LHON Collective Name and Logo immediately and without prior notice if LHON Collective determines in its sole discretion that Organizer has violated any of these Program Policies & Guidelines. 

Indemnity

Organizer of the Fundraiser agrees to indemnify and hold harmless LHON Collective, its affiliates, officers, employees, agents, representatives, contractors and licensees from and against all claims, losses, damages, liabilities and expenses, including reasonable attorney’s fees, arising out of or occasioned by any act or omission of Organizer, or his/her/its officers, partners, employees, agents, volunteers, contractors, the licensees, guests, invitees, or attendees, in connection with the Fundraiser.

How To Request Permission

Email LHON Collective to request permission to use the LHON Collective trademarks, including Name, Logo, and Tagline

By sending LHON Collective an email to connect@lhon.org to request permission to use the LHON Collective trademarks, you agree to the above terms and conditions of use. Please copy and paste the below requested items into the body of your email. Your sent email request with this information included will signify your Acknowledgement or Agreement to the above terms and conditions regarding use of the LHON Collective trademarks.

Trademark Permission Request Items to copy and include in your email request:

  • Full Name 

    • First Name

    • Last Name

  • Email 

  • Phone 

  • Date of your event 

  • Tell us about your event 

  • How will you use our trademark(s)? 

Top of Page

Additional US State Privacy Rights

Last updated: March 14, 2025

What does this info 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:

  • Colorado, Connecticut, Utah, and Virginia specific disclosures and rights

  • California-specific disclosures and rights

  • What personal information do we sell or share

  • What rights you have

  • 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:

  • Right to confirm whether the controller is processing the consumer’s personal information and the right to access such information

  • Right to correct inaccuracies in personal information

  • Right to delete personal information

  • Right of data portability

  • Right to opt out from targeted advertising

  • 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:

  • Identifiers and contact information, such as:

    • Name

    • Email address

    • Telephone number

    • Postal or Physical Address

    • Country

  • 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)

  • Types of Services of interest

  • Professional, educational, or other demographic information, such as:

    • Date of birth

    • Company or school name

    • Title

    • Occupation

    • Job function

    • Expertise

  • 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)

    • Analytics or other electronic network activity, such as:

      • IP address

      • Browser

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:

  • Personal information you provide directly to us, such as on a form, via email or telephone, etc.

  • Personal information we automatically or programmatically collect or generate from your access to and use of LHON Collective website or services

  • 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

  • Personal information we obtain or receive from other sources, including:

  • Data brokers and aggregators from which we obtain information to supplement the personal information we collect.

  • Third-party partners, such as third-party applications and services, including social networks, you choose to connect or interact with through our services

  • Co-branding or marketing partners, such as companies with which we offer co-branded services or events, or engage in joint marketing activities

  • Service providers that collect or provide data in connection with the work they do on our behalf

  • 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.

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • Inferred Information

  • Biometric Information

  • 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.

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • Inferred Information

  • Biometric Information

  • 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 and Software to better understand how they are being used so we can improve them and engage and retain users, and conduct research.

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • Inferred Information

  • Biometric Information

  • Sensitive Personal Information

Personalization

To understand you and your preferences to enhance your experience and enjoyment using our Services and Software.

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • Inferred Information

Customer support

To provide customer support and respond to your questions.

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • Inferred Information

Communications

To send you information, including confirmations, invoices, technical notices, updates, security alerts, and support and administrative messages.

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • 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).

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • Inferred Information

Advertising

To display advertising to you (see the Cookies section for information about personalized advertising and your advertising choices).

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • 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.

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • Inferred Information

  • Biometric Information

  • 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

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • Inferred Information

  • 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

  • Identifiers and Contact Information

  • Commercial and Transaction Information

  • Professional, Education, or other Demographic Information

  • Analytics or other Electronic Network Activity

  • Inferred Information

Purpose for Disclosure - to centralize client data, streamline processes, manage marketing campaigns, and improve customer 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, disclosure, or sale 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 or sold 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.

6. Right against Discrimination

You have a right to not be discriminated against for exercising your rights set out in the CCPA.

7. Right to Notice

You have a right to receive notice of our practices at or before collection of personal information.

Additional information on exercising your rights

You have the right to exercise the rights listed above and in our Privacy Policy free of charge or penalty, but we may limit the number of requests you make or charge reasonable fees as legally permitted. You may exercise many of these rights yourself by adjusting your preferences as outlined in the Your Privacy Choices section, or you can get in touch with us by sending an email to connect@lhon.org.

When you make a request through email, your email address will be matched with the email you previously provided that is associated to the information you are inquiring about.

Privacy Contact

Please see our Privacy Policy for details on how to contact LHON Collective if you have a privacy question, concern, or request.

Top of Page

BACK:

HOME

bottom of page