Terms & Conditions

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1.    Definitions

In the context of these terms and conditions, the following words shall have the following meanings:

  • "LHON Society" means Lebers Hereditary optic Neuropathy Society a registered charity in England and Wales (u).  Registered address:  u.
  • "Material" means all of the information, data, text, graphics, links or computer code published on, contained or available on the Website;
  • "User" means the individual, firm, company or organisation accessing the Website and/or ordering any goods or services, registering for any events and/or making any donations;
  • "Website" means any website under the ownership or control of LHON Society from which a link has been created to these terms and conditions;

2.    Applicable terms and conditions

The Website is owned by LHON Society and any use made of the Website (including registrations and donations and orders for goods or services made via the Website), is subject to these terms and conditions. LHON Society may, at its sole discretion, modify or revise these terms and conditions at any time by updating the text of this page.

3.    Use of the Website

Anyone is entitled to view any non-password protected parts of the Website and to use for their own purposes the information contained therein, provided:

3.1.it is used for information purposes only, for reproduction for personal use only and not for reproduction on any other website or for commercial gain.

3.2.any links created to the Website are notified to and approved by LHON Society before they are created.

3.3.no part of the Website is copied, stored in a retrieval system, or transmitted in any form or by any means to any third party without the written permission of LHON Society.

4.    Copyright and trade marks

4.1.Copyright in the Material is owned by LHON Society or its content suppliers. Unauthorised use of the Material including reproduction, storage, modification, distribution or republication without the prior written consent of LHON Society or, where applicable, the respective copyright owner(s) is prohibited.

4.2.The names and logos of LHON Society and all related product and service names, designs marks and slogans are the trade names, service marks or trade marks of LHON Society and may not be used without the prior consent of LHON Society.

4.3.All works in the nature of databases attract database rights.

5.    Disclaimer

The Website is intended to provide general information only and, as such, should not be considered as a substitute for advice covering any specific situation, including but not limited to appropriate medical, welfare, social or financial advice.

Users should seek appropriate advice before taking or refraining from taking any action in reliance on any information contained in the Website. So far as permissible by law, LHON Society does not owe a duty of care and does not accept any liability to any person relating to the use of any such information.

The website contains information specific to the UK and it may not be appropriate to apply some of the information to activities outside the UK


Whilst LHON Society has taken every precaution in compiling the Website neither it nor any contributors to the Website can be held responsible for any action (or the lack thereof) taken by any person or organisation wherever they shall be based, as a result, direct or otherwise, of information contained in or accessed through the Website.

6.    Target audience

The Website is intended only for use by UK residents and only in relation to their activities within the UK. It may be dangerous to apply any of the information on the Website to activities outside the UK.

LHON Society does not represent or warrant that the information accessible via the Website is accurate, complete or correct. LHON Society has no liability whatsoever in respect of any use which you make of such information except in the case of personal injury or death caused by the negligence of LHON Society.

The information provided on this Website has not been written to meet individual requirements and it is your sole responsibility to satisfy yourself prior to using the information in any way for your purposes. Before making any decisions based on the information contained on the Website, you are strongly advised to refer to alternative, independent sources of information to substantiate the basis for your decision.

7.    Warranty and indemnity

The User warrants to LHON Society that it will not use the Website, the Material or any part thereof for any purpose that is in contravention of any applicable law or regulation or in a manner that will infringe the copyright, trademarks, service marks or other intellectual property rights of third parties or violate the privacy, publicity or other personal rights of others or in any defamatory, obscene, threatening, abusive or hateful manner.

The User shall indemnify and hold harmless LHON Society, its employees and agents, against all claims, liability, losses, damages and expenses including, without limitation, legal fees and costs arising out of or incurred as a result of any claims made, or litigation brought, against LHON Society, its employees and agents, as a result of the use by the User of the Website, the Material or any part thereof for whatever purpose, to the fullest extent permitted by law.

8.    Limitation of liability

LHON Society hereby disclaims all warranties and conditions with regard to the Material and any goods or services supplied in relation to the Website, whether express or implied or statutory (including all implied warranties and conditions of merchantability and fitness for a particular purpose). In no event shall LHON Society be liable for any indirect, punitive, special, incidental, or consequential damages whatsoever even if LHON Society has been advised of the possibility of damages including, without limitation, damages for loss of use, data or profits arising out of or in any way connected with the use or performance of the Website, interruptions or delays to the Website, the provision of or failure to provide services, or for any information, Material, goods and services obtained through the Website or otherwise arising out of the use of the Website, whether based on contract, tort or otherwise to the fullest extent permitted by law.

9.    Third party websites

The Website contains links to websites operated by parties other than LHON Society. Such links are provided for the User's convenience only.

LHON Society does not control such websites, and is not responsible for their content.

LHON Society's inclusion of links to such websites does not imply any endorsement of the material on such websites or any association with their operators. The User is solely responsible for evaluating the accuracy and completeness of any information contained on the third party websites, and also the value and integrity of any goods and services offered by such websites.

10.    Privacy and Data Protection

Read our Privacy Policy

11.    Cookies

LHON Society uses cookies to enhance the online experience of its visitors and to better understand how the Website is used.

Read our Cookies Policy

12.    Viruses

Whilst LHON Society makes all reasonable attempts to exclude viruses from the Website it cannot ensure such exclusion and no liability is accepted for damage caused through the downloading of viruses. Therefore, you are recommended to take all appropriate safeguards before downloading information from the Website.

13.    On-line Transactions

LHON Society reserves the right to vary event registration fees and the prices of any goods or services listed without notice. All event registrations and orders for goods or services are subject to availability and LHON Society reserves the right to refuse to accept any registration and to refuse to supply any goods or services to any individual.

14.    Encryption

Although the Website uses encryption security software in areas where on line payment details are accepted, the security of information and payments transmitted via the Internet cannot be guaranteed. Any loss incurred or sustained by any User who transmits information by means of e-mail or other Internet links shall be borne solely and exclusively by such User and in no event shall any such loss in whole or part be borne by LHON Society or its agents.

15.    Force majeure

LHON Society shall not be held to be in breach of its obligations hereunder nor liable to the User for any loss or damage which may be suffered by another party due to any cause beyond its reasonable control including without limitation any act of God, fire, storm, flood, lightening, disease, strike, trade dispute, act of terrorism, any act or omission of government or regulatory bodies or communications operators.

16.    General

16.1.             If any provisions of these terms and conditions are held to be invalid or unenforceable, the validity or enforceability of the remaining provisions shall not be affected.

16.2.             These terms and conditions constitute the entire agreement between LHON Society and the User and supersede all other (prior or contemporaneous) communications and proposals, whether electronic or written, between the User and LHON Society.

16.3.             Any failure of LHON Society to exercise or enforce any of its rights under these terms and conditions shall not be deemed to be a waiver of any such rights or operate so as to bar the subsequent exercise or enforcement or any such rights.

17.    Jurisdiction

The terms and conditions and the use by the User of the Website shall be governed by the laws of England and Wales and the parties hereto submit to the exclusive jurisdiction of the English courts in all disputes arising out of or relating to the Website and/or any transactions made on the Website, or these terms and conditions.



Privacy statement


At LHON Society we are committed to protecting your privacy. This statement describes how LHON Society collects and uses personal information about people who visit our websites. The terms of this statement may change, so please check it from time to time.

If you have any queries about this privacy statement please contact the Trustees at at the LHON Society, u or email u.

1.    How do we collect information?

We obtain personal information from you when you enquire about our activities, register with us, make a donation to us, ask a question about LHON or otherwise provide us with personal information. We may also receive information about you from third parties, for example from our service providers or from a friend who wants to tell you about our websites or the fundraising activities we carry out.

2.    What information do we collect?

The personal information we collect might include name, date of birth, email address, postal address, telephone number and credit/debit card details. We may also collect health information if you tell us about your LHON experience or the experiences of a friend or relative.

We also gather general information about the use of our websites, such as which pages users visit most often and which services, events or facilities are of most interest. We may also track which pages users visit when they click on links in LHON Society emails. We may use this information to personalise the way our websites are presented when users visit them, to make improvements to our websites and to ensure we provide the best service for users. Wherever possible we use aggregated or anonymous information which does not identify individual visitors to our websites.

3.    How do we use this information?

We will use your personal information:

  • to provide you with the services, products or information you have requested;
  • to create an account for you if you register with us;
  • for administration purposes;
  • to further our charitable aims, including for fundraising activities.

As part of this, we may analyse the personal information we collect to create a profile of your interests and preferences so that we can contact you in the most appropriate way and with the most relevant information. Where relevant, we may also assess your personal information for the purposes of fraud and credit risk reduction.

If you enter your contact details in one of our online registration forms, we may use this information to contact you even if you don’t "send" or "submit" the form. We will only do this to see if we can help with any problems you might be experiencing with the form or with our websites.

We may need to share your information with our service providers, associated organisations and agents for the purposes described above.

4.    Information nurses

If you contact the information nurses, either through CancerHelp UK or directly, you may choose to provide details of a personal nature. Only the information nurses will use your personal information and only for the purposes of dealing with your enquiry. They will not pass on your details to anyone else without your express permission, except in exceptional circumstances to comply with the nurses’ code of professional conduct or the law. Examples of this might include children contacting the service reporting abuse, anyone reporting serious self harm, anyone expressing the intention of harming someone else, or if a terrorist threat is reported.

Your personal information and details of the enquiries received are stored on a secure database. If for any reason you wish to have your personal details removed from their records, please contract the information nurses.

If you send feedback to the LHON Society team, the feedback will be noted and your contact details kept for a maximum of 3 months. If you have sent a complaint to the site, the correspondence will be kept securely in a complaints file for a maximum of one year, in case we need to refer back to it.

5.    Your choices

You have a choice about whether you want to receive information about our progress and fundraising activities. We will not use your personal information for marketing purposes if you have indicated that you do not wish to be contacted. You can change your marketing preferences at any time by contacting u, by phone on u, or email u.

6.    Under 16s

LHON Society is concerned to protect the privacy of children aged under 16. Where appropriate we will seek consent from a parent or guardian before collecting personal information about a child aged under 16.

7.    Do we use cookies?

Please refer to our cookie policy for details of how we use cookies and the type of cookies served through our web sites.

8.    How do we protect personal information?

All of our online forms are protected by encryption. We also use a secure server when you make a donation or payment via our websites. We take appropriate measures to ensure that the personal information disclosed to us is kept secure, accurate and up to date and kept only for so long as is necessary for the purposes for which it is used.

9.    Will we disclose the information we collect to outside parties?

As indicated above, we may pass your information to our service providers, agents and associated organisations for the purpose of completing tasks and providing services to you (other than information provided in a query to information nurse teams). Where we use service providers we will make sure there are appropriate controls in place.

We may also need to disclose your information if required by law (for example to government bodies and law enforcement agencies) or if we have your permission to do so.

We will not sell any information about your web browsing activity.

10.    Your consent

By providing us with your personal data, including sensitive personal data such as on your health, you consent to the collection and use of this information in accordance with the purposes described above and this privacy statement.

You also consent to our transferring your information to countries or jurisdictions outside the UK if necessary for the above purposes. These countries may not provide the same level of data protection as the UK. If we do make such a transfer, we will, if appropriate, put appropriate controls in place to ensure your information is protected.

11.    Right of access

If you have created an account with us, you can sign into your account to access and update your information.

You have the right to ask for a copy of the information we hold about you (for which we may charge a small fee) and to have any inaccuracies in your information corrected. If you wish to exercise these rights, contact u or email u

12.    Links

Our websites may include links to websites run by other organisations. LHON Society is not responsible for the privacy practices of these other websites so you should read their privacy policies carefully.

13.    Changes

If your personal details change, please help us to keep your information up to date by notifying us at the above address.

We may change the terms of this privacy statement from time to time. If we do so, we will post the changes here so please check from time to time. By continuing to use our websites you will be deemed to have accepted such changes.



Cookies Policy


1.    What are cookies?

Cookies are small text files that web sites often store on the computer hard drives of visitors to their sites. They are widely used in order to make web sites work, or work better, as well as to provide information to the owners of the site. A cookie often contains a unique number, which can be used to recognise your computer when a user of your computer returns to a website that it visited previously.

2.    How does LHON Society use cookies?

We use cookies to enhance the online experience of our visitors and to better understand how our sites are used. Cookies may tell us, for example, whether you have visited our site before or whether you are a new visitor. 

3.    Types of cookies

There are two broad types of cookies - 'first party cookies' and 'third party cookies':

  • First party cookies are cookies that are served directly by the website operator to your computer, and are often used to recognise your computer when it revisits that site and to remember your preferences as you browse the site.
  • Third party cookies are served by a service provider on behalf of the website operator, and can be used by the service provider to recognise your computer when it visits other web sites. Third party cookies are most commonly used for web site analytics or advertising purposes.

In addition, cookies may be either 'session cookies' or 'persistent cookies'. Your computer automatically removes session cookies once you close your browser. Persistent cookies will survive on your computer until an expiry date specified in the cookie itself, is reached. 

4.    Cookie categories

We use the categorisation set out by the International Chamber of Commerce (ICC) in their UK Cookie Guide, produced in April 2012.  The guide is available to download in PDF format (290KB).

The guide identifies four categories of cookies, outlined below:

  1. Strictly necessary cookies:
    • These cookies are essential for the user to move around the website and to use its features, e.g. shopping baskets and e-billing.
  1. Performance cookies:
    • These cookies collect information about how the user makes use of the site, e.g. which pages the user visits most.
    • These cookies do not collect information that identifies the user.
  1. Functionality cookies:
    • These cookies remember choices made by the user and enhance the features, e.g. language or users location.
    • This cookie is also used to remember a user's preferences for a font size, or customisable parts of a web page.
  1. Targeting or advertising cookies:
    • These cookies collect information about the users' browsing habits.
    • This may also include links to social media sites, e.g. Facebook, etc.

5.    Your rights

You have the right to choose whether to accept these cookies. You can exercise this right by amending or setting the controls on your browser to reflect your cookie preferences.

However, please note that if you choose to refuse cookies you may not be able to use the full functionality of this website. 

6.    Changing your cookie preferences

The "Help" menu in the toolbar of most web browsers will tell you how to change your browser's cookie settings, including how to have the browser notify you when you receive a new cookie, and how to disable cookies altogether.

An online guide is available if you have difficulties trying to change your browser settings.

  1. Additional references


Further information about cookies and how to control their use is available from All About Cookies and Your Online Choices.



Web accessibility statement

The Website has been designed with the needs of people with sight problems in mind, including those who use access technology to browse the internet. We have also taken on board international guidance and best practice on web accessibility. 


We are committed to ensuring everyone can access our website. This includes people with sight problems, hearing, mobility and cognitive impairments as well as users with dial-up, older browsers or newer technologies such as smartphones and tablets. 


If you have any comments and or suggestions please don't hesitate to contact us about the site by emailing u 

1.    Conformance statement

LHON Society works towards meeting the RNIB Surf Right Guidelines for web accessibility. The checkpoints are taken from Website Accessibility Initiative (WAI) guidelines, published by the World Wide Web Consortium (W3C)

The site is tested regularly to ensure that we are working towards the standards. The site also undergoes user testing by blind and partially sighted users.


We test the website using the following browsers:



  • Internet Explorer 7, 8, 9 and 10
  • Chrome 33
  • Firefox 28
  • Opera 20
  • Chrome 33
  • Firefox 28
  • Safari 7
  • Opera 20
  • Apple iOS - Safari 6 on iOS6 and Safari 7 on iOS7
  • Android - Default web browser and Chrome 33



2.    Surf Right

RNIB's take on web accessibility has been summarised in the Surf Right standard which the LHON Society subscribes to. This is the result of an intensive work of research aimed to address the most important challenges faced by disabled people. 

Most of the guidance and requirements that need to be met to reach the Surf Right standard are based on the World Wide Web Consortium (W3C) Web Accessibility Initiative (WAI) recommendations. The Surf Right standard is aligned to the WAI Web Content Accessibility Guidelines 2.0 (WCAG 2.0).

3.    Main differences with WCAG 2.0

There are some differences in the organisation of guidelines and conformance requirements between Surf Right and WCAG 2.0. Surf Right is similar to WCAG 2.0 Double-A guidance, with the following main differences:

  • Exclusion of WCAG Double-A requirements: Surf Right does not require two of the more technically challenging WCAG 2.0 Double-A requirements where practical alternatives can be provided.
  • Inclusion of WCAG 2.0 Triple-A requirements: Surf Right includes some of the higher level requirements of WCAG 2.0, where our experience shows that they are both valid and important to disabled users.
  • Reliance on client-side script: WCAG 2.0 allows reliance on accessibility supported JavaScript or other client-side script. Surf Right requires that an alternative mechanism is provided for core or important information and functionality.
  • Additional requirements: Surf Right requires the use or avoidance of some techniques where experience has proved that to do so would significantly improve accessibility. Currently these techniques (called Surf Right Best Practice requirements) aren't specifically mentioned in WCAG 2.0 sufficient techniques or failures.

4.    Further information

For more details about Surf Right and RNIB's work with web accessibility, contact webeditor@rnib.org.uk.

Report websites with accessibility issues to Fix the Web.