LHON Collective Policy Center
Policies that protect and guide our community.
The LHON Collective Policy Center makes it easy to find information on general policy topics.
Table of Contents
Non-Discrimination Policy
Last updated: June 3, 2026
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.
LHON Collective will make decisions regarding recruitment, volunteer participation, vendor selection, services, and other organizational activities based on qualifications, experience, merit, organizational needs, and other lawful considerations, without regard to protected characteristics.
Accessibility Statement
Last updated: June 12, 2026
Our Commitment
LHON Collective is committed to making this website accessible to everyone, including people with disabilities. We strive to meet the Web Content Accessibility Guidelines (WCAG) 2.1 at Level AA, and where possible, Level AAA. Accessibility is not an afterthought — it is central to our mission of supporting a community that includes people living with vision loss.
If you are having difficulty viewing or navigating the content on this website, or notice any content, feature, or functionality that you believe is not fully accessible to people with disabilities, please email us at connect@lhon.org with “Accessibility Feedback” in the subject line and provide a description of the feature you feel is not fully accessible and/or a suggestion for improvement.
We take your feedback seriously and will consider how to incorporate it as we endeavor to accommodate all who use our website to continuously improve our overall accessibility.
Conformance Status
This website is conformant with WCAG 2.1 Level AA.
Known Accessibility Issues
We have audited this website and identified no accessibility issues as of June 10, 2025.
What We've Done Right
We want to be transparent about what is already in place:
-
The site language is declared (lang="en"), helping screen readers pronounce content correctly.
-
A Skip to Content link is available at the top of every page, allowing keyboard users to bypass repetitive navigation.
-
Decorative images are correctly marked with empty alt attributes (alt=""), so screen readers do not announce them unnecessarily.
-
All internal and external links are live and functional — no broken or dead links were found.
-
BACK and NEXT navigation links throughout the site accurately describe their destinations.
Assistive Technologies We Test With
We aim to support the following assistive technologies:
-
Screen readers: VoiceOver (macOS/iOS), (Windows)
-
Keyboard-only navigation (no mouse)
-
Browser zoom up to 200%
How to Get Help or Report an Issue
If you encounter an accessibility barrier on this site, or if you need any content in an alternative format, please contact us:
-
Email: connect@lhon.org
-
Subject line: Accessibility Feedback
We aim to respond to accessibility inquiries within 5 business days. Your feedback directly shapes our improvement priorities.
Our Improvement Timeline
We are committed to resolving all issues identified in a timely manner. Our target is to address all Level A and AA issues within 90 days of a non-compliance issue’s identification, and to continue improving toward AAA compliance on an ongoing basis.
Technical Approach
This website is built on Wix. Some accessibility limitations may be inherent to the platform's components. Where platform constraints exist, we will document them here and pursue available workarounds. We conduct manual accessibility reviews and use automated tools (including axe DevTools) to supplement our testing.
This statement was prepared following a manual audit conducted in June 2026. It will be reviewed and updated whenever significant content changes are made to the site.
Code of Conduct
Last updated: June 3, 2026
This Code of Conduct applies to all attendees and participants of meetings, events, or conferences, whether in person or virtual. LHON Collective, as well as those in the United States LHON community who lead LHON-related meetings or events, are committed to providing a safe, respectful, and inclusive environment for all participants, regardless of gender, gender identity and expression, sexual orientation, disability, physical appearance, body size, race, ethnicity, religion, or any other personal characteristic.
Expected Behavior
-
Treat all participants with respect, kindness, and professionalism.
-
Be in a sober and alert state throughout the meeting. Be aware that consuming excessive alcohol or other substances may impair your judgment or communication.
-
Speak courteously and allow others to finish before responding.
-
Give everyone an opportunity to contribute. Do not dominate the conversation.
-
Respect differing viewpoints and experiences.
-
Avoid interrupting, talking over others, or using offensive language.
-
Use inclusive language and avoid discriminatory remarks.
-
Dress appropriately, remembering you may be photographed or on camera.
-
Follow the instructions of administrators or staff and any on-site venue rules.
Unacceptable Behavior
-
Harassment, intimidation, or discrimination in any form.
-
Disruptive, disrespectful, or unsafe conduct.
-
Unwelcome physical contact or attention.
-
Recording or photographing individuals without consent.
-
Attempting to sell products or profit financially from attendees without prior authorization from LHON Collective Leadership or appointed meeting leaders.
Privacy & Confidentiality
-
Do not share meeting content, recordings, or chat messages without permission.
-
Respect the confidentiality of sensitive information discussed.
Technical Etiquette for Virtual Attendance
-
Test your audio/video before the meeting starts.
-
If able, try to use tools like the mute button on Zoom to avoid having background noise disrupt the meeting.
-
When possible, keep your camera on to encourage engagement.
-
Keep in mind that if you have trouble breaking into the conversation, you can use the chat or “raise hand” feature, or physically raise your hand, to signal you’d like to speak.
-
If you need to multitask, ensure that you are on mute/camera off so you do not distract others from the meeting.
-
The Zoom administrator has the right to, and will, mute your microphone or turn off your camera as necessary if your behavior is deemed discourteous.
Reporting Concerns
If you experience or witness unacceptable behavior, please contact a conference/meeting organizer/leader immediately. All reports will be handled confidentially and respectfully.
Consequences
Failure to abide by the policies set forth in this code of conduct may result in being removed from an event and/or meeting. No refunds for fees will be given, and the individual will not be allowed to return for the remainder of the event and/or may be barred from attending future events.
LHON Collective Policy for Working
with the Pharmaceutical Industry
Last updated: June 3, 2026
The mission of LHON Collective is to accelerate progress towards a cure for Leber Hereditary Optic Neuropathy (LHON) while improving the lives of people living with LHON.
To best accomplish this goal, LHON Collective will evaluate opportunities to work collaboratively including partnerships and financial support from pharmaceutical companies which can bring benefits to accelerate the development of new drugs and treatments.
Collaboration with all stakeholders
To prioritize finding a cure rapidly, we need to work in collaboration with all stakeholders, including pharmaceutical companies. Our main obligation will be to select those affiliates with care and ensure that we protect the data of any patient that is shared with their explicit consent, and that this data is only used in studies, trials and research that meets the goals of LHON Collective and our patient population. We will be transparent with patients about any formal relationships we make to ensure patient confidence in those relationships, so that the patient is also a formal partner in our shared mission to find a cure.
This LHON Collective Policy for Working with the Pharmaceutical Industry (Policy) therefore lays out how LHON Collective makes decisions to work and partner with the Pharmaceutical Industry. In this document Pharmaceutical Industry/Companies is taken to stand for all types of pharma, biotech/diagnostic companies, and medical device companies.
About the policy
This Policy defines how LHON Collective works with the Pharmaceutical Industry including the funding we receive and the manner that we form any formal working relationships. It is important that we:
-
Maintain our independence and impartiality
-
Are transparent, consistent, and fair when working with the industry
-
Maintain our integrity and reputation
-
Remain true to our patient-centered approach, putting patients first for every decision we make to ensure the best possible outcomes
-
Show our commitment to working collaboratively with pharmaceutical companies, alongside other stakeholders to improve patient outcomes
-
Remain accountable to our stakeholders and our Board of Trustees
Working principles
What are the working principles LHON Collective will abide by when engaging with Pharmaceutical companies?
-
Integrity – All partners must be aligned with the values of LHON Collective. We will always act with honesty and integrity in all that we do.
-
Independence – LHON Collective will ensure that it maintains independence of its decision-making in all partnerships and editorial independence so that we are free to comment both positively and negatively about pharmaceutical companies and their products.
-
Transparency – All partnerships must be transparent. We will be clear on which organizations we are working with and why. Details of companies we are working with will be published on our website throughout the duration of a partnership.
-
Clarity of purpose – We will only work with pharmaceutical companies on projects that fit with the LHON Collective’s strategic goals.
What type(s) of funding would LHON Collective receive from pharmaceutical companies?
LHON Collective currently receives no income from pharmaceutical companies, but is currently engaging with a range of companies that have or are looking to develop drugs or treatments for use in LHON that may develop into LHON Collective receiving funding.
What rules will we apply to income we receive from pharmaceutical companies?
The total level of funding received from pharmaceutical companies on an annual basis shall be on the basis below. This excludes any royalty payments due to LHON Collective.
1) Core operational funding: The percentage of funding from Pharmaceutical companies can range up to a percentage of 45% of total income for core expenditure per annum. The rest of LHON Collective’s income will consist of voluntary donations from individuals and fundraising activities. We currently also receive no government funding.
2) Project Activities: The percentage of funding from Pharmaceutical companies for Project Activities shall be decided on a case-by-case basis in line with this Policy. There is no requirement for an upper limit on income received from pharmaceutical companies in relation to these costs and no fixed proportion of how much one company can provide. A summary of decisions will be made available on request. LHON Collective maintains decision-making independence in relation to project activities through our Board of Directors’ guidance and decisions and editorial independence over any materials, meetings, and agendas related to the project.
All companies that LHON Collective collaborates with must adhere to their local Code of Practice based on their national and regional geographic location.
The names of all pharmaceutical companies that LHON Collective receives income from will be listed on the LHON Collective website along with the total amount received in the current financial year. All income and all significant donations in kind will also be listed in any statement of accounts created.
What guidelines does LHON Collective follow when working with the Pharmaceutical Industry?
-
LHON Collective collaborates with a variety of companies, giving no preference to any one company.
-
LHON Collective will not disclose or share any confidential service user data with pharmaceutical companies or their agencies unless explicit consent has been given.
-
Our strategy, activities or information will not be influenced by our workings with Pharmaceutical Industry partners/collaborators.
-
We will not promote, endorse or favor any particular product.
-
A signed written agreement with all companies must be in place which outlines each partner’s contribution and responsibilities before LHON Collective accepts funding or agrees to a collaboration
-
Prior written approval for the use of the LHON Collective logo or name must be agreed in writing with the LHON Collective CEO. LHON Collective will need to sign off usage of the logo in all instances of use such as marketing collateral, websites, social media to ensure adherence to the LHON Collective brand guidelines.
-
LHON Collective retains the right to terminate any working relationship with a company who is seeking to coerce or conform the work of LHON Collective to its agenda.
-
We recognise that individuals who work for pharmaceutical companies may wish to fundraise for LHON. Any such fundraising will not influence our work or information provided to people living with LHON.
-
LHON Collective will work with members of the Pharmaceutical Industry to share knowledge and expertise. This may involve the participation in Pharmaceutical Industry organized events such as private or public meetings, training events, advisory board meetings and market research events or Pharmaceutical Industry involvement in LHON Collective organized events.
-
This Policy does not exclude LHON Collective Board of Directors, advisors, or staff working with or investing in the Pharmaceutical Industry in their private capacity, but external interests must be declared in line with LHON’s Conflicts of Interest Policy.
In-Person Event Policies
Last updated: June 3, 2026
Service Animals Policy
Service Animals at LHON Collective Events are permitted to attend LHON Collective events in accordance with federal, state, and local laws as a reasonable accommodation for those with disabilities.
Owners are required to always be with the service animal and be considerate and aware of other event participants and their experience of the event. If a service animal is disruptive to the meeting or creates an unsafe environment for others (including other service animals), LHON Collective reserves the right to request the animal leave the event.
Travel Planning Policy
For the health, safety, and security of all participants, event attendees are exclusively responsible for their own personal care and management during LHON Collective events.
LHON Collective is not responsible for, and does not provide support with, the acquisition, hiring, or management of personal caregiver services; medication and medical supplies; durable medical equipment rentals and repairs; accessible transportation services; or medical services. All event attendees are responsible for making advance arrangements for personal care, equipment, and medical needs. In the event of a medical emergency during an event, LHON Collective will contact the local emergency or medical service.
Child / Minor Event Attendees Policy
LHON Collective is not responsible for children and minors at LHON Collective meetings and events. Children and minors are welcome to attend events, and parents/guardians will always be responsible for their child/minor(s). Childcare will not be available or provided by LHON Collective staff or their contractors at any LHON Collective event. Parents should ensure that they are able to provide care during the event, and/or arrange backup childcare in case of an emergency. If a child is disruptive to the meeting, LHON Collective reserves the right to request the child leave the event.
Assumption of Risk Policy
By registering for an in-person event, such as the 2027 LHON Conference, I hereby assume all risks associated with, resulting from, or arising in connection with, participation in any capacity in the 2027 LHON Conference or any conference-related activities, including, without limitation, all risks of theft, loss, harm, damage, illness or sickness (including those caused by known or unknown infectious or communicable disease such as COVID-19, H1N1, or other illness or sickness caused by bacteria, fungi, microorganisms or viruses), or injury to the person (including death) or property damage, whether caused by negligence, intentional act, accident, act of God, or otherwise.
