Privacy Policy

Lebers Hereditary Optic Neuropathy Society (LHON society) is a UK based charity and patient support group registered with the Charity Commission for England and Wales (charity number 1157206). Our purpose is to provide support and information to those affected by LHON and to facilitate the search for effective treatments for the condition. Our registered address is The Hayloft, Pury Hill Business Park, Alderton, Northamptonshire, NN12 7LS

We take your privacy seriously and make every effort to keep your details secure. This policy explains how and why we use your personal information.

How do we collect information from you?

We obtain information about you when you enquire about our activities, subscribe to our membership, make a donation, request information or support 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 website or the activities we carry out.

What type of information do we collect?

Depending on how you interact with us, we may collect some or all of the following personal information: name, address, email address, phone number, age, gender and LHON mutation. If you make a donation online, we do not hold your bank details, it is collected by a third party who specialise in processing secure online donations on behalf of charities. We may also collect some health and other 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 website and may also track which pages users visit when they click on links in LHON Society newsletter and emails.

How is your information used?

We use your information to process and administer your society membership and donations and to send you relevant news and information that is of interest or necessary for us to carry out our work. We also use the information to provide support or information when requested via individual contact to the society. We may use the information to improve our website, newsletter and other services we provide.

Who has access to this information?

We do not sell your information to third parties or share your information for marketing purposes. We may pass your information to our third party service providers for the sole purpose of completing tasks and providing services to you on our behalf, eg CAF Donate who process donations and MailChimp who process the society membership. These third parties may be acting as data controllers of your information and we therefore advise you to read their own Privacy Policies.

Your choices

You have a choice about whether or not you wish to receive news and information from us. If you wish to receive newsletters and other communications from us, we will be relying on you giving us consent about how and why we contact you. You will be asked to select your choices on the membership subscription form when you join the LHON society. You can withdraw this consent at any time either by choosing ‘unsubscribe’ on the communications sent to you or by contacting us at

Your rights

The accuracy of your information is important to us. You can update or correct your personal data by choosing ‘update subscription preferences’ on the communications sent to you or by contacting us at You have the right to ask for a copy of the information we hold about you or to restrict the processing of your information. You have the right to ask for the information we hold about you to be erased.

Our security safeguards

When we collect your personal information, we take steps to ensure that it is secure. Non-sensitive details such as your email address are transmitted normally over the Internet, and this can never be guaranteed to be 100% secure and we cannot guarantee the security of any information you transmit to us. Once we receive your information, we make every effort to ensure its security.


The LHON society website, like many others, uses cookies. These are small pieces of information sent by an organisation to your computer and stored on your hard drive to allow that website to recognise you when you visit. They collect statistical data about your browsing actions and patterns and do not identify you as an individual. This can help us to improve our website and deliver a better service.

Website links

Our website contains links to other websites run by other organisations. This privacy policy applies only to our website‚ so we encourage you to read the privacy statements on other websites you visit. We do not control other websites, and are not responsible for their content.

Policy review

We review this policy regularly. This Policy was last updated in May 2018. If you have any questions regarding this policy or how we use your personal information, please contact us at

Web accessibility statement

The LHON society 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. The site is also tested regularly by blind and partially sighted users.

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