Privacy Statement


About Us

The Nystagmus Network is the foremost charity in the UK providing support and information about the eye condition nystagmus.

The charity was established in 1984. It stands at the forefront in promoting a better understanding of the condition and leads the way in funding research.

Nystagmus Network is the ‘data controller’ for the personal data about our members, supporters, event attendees and the children and families we advise and support.

This privacy notice explains how the Nystagmus Network uses and protects your personal information, including data from your use of our website.

Our ICO registration number is ZA448104

If you have any questions about how your data is used, or want to make a request about how we use your data in the future, please contact sue.ricketts@nystagmusnet.org.

How we use your personal data

We use personal data to provide our membership services, offer information and support to children and families, promote awareness of nystagmus, secure support for the charity, recruit nystagmus research participants and meet our legal obligations.

How we use your data when you become a Member

When you join the Nystagmus Network we ask you for some personal data including your contact details (name, postal address, email address and contact telephone number) so that we can communicate with you and provide you with the benefits included in membership. We need this personal data from you so that we can fulfil the contract that you enter into when you purchase your membership subscription.  In data protection terminology, this means that the ‘lawful basis’ for our use of the data is contractual. We use your information while your membership is active. If your membership lapses, we will continue to keep your personal data for 10 years or until you ask us not to. This is because nystagmus is a life-long condition and, in our experience, previous members often wish to rejoin at a particular milestone. You can ask us at any time to stop using or to delete your information.

How we use your data when you seek our advice and support

When you seek our advice by email, phone or via the contact us pages on our website, we will use your personal data to provide you with an answer. We keep a summary of the questions we are asked so that we can understand what questions are commonly asked, and for reporting purposes. We keep the log of questions and email threads for 10 years.

When you seek advice and support from our education advisors we will ask you to provide detailed information about your or your child’s situation, including about their special educational needs. We need this information so that we can get an understanding of how best to help you and what support you may be entitled to. We use this information while the support is ongoing. Our experience is that families often return to us at a later stage for further support and so we will keep your information for 10 years or until your child is 25, unless you ask us not to. You can ask us at any time to stop using or to delete your personal information.

When we use your personal data to provide advice and support, we do it on the basis of our ‘legitimate interest’ as a charity (if you would like to see a fuller explanation of this, please ask us) and on the basis of ‘consent’ when there is health information involved.

How we use your data when you volunteer for us

When you volunteer with us, we ask you for personal data to make decisions about the role and to provide support to you.

When we use your information for this purpose, we do it on the basis of our ‘legitimate interest’ as a charity. If you would like to see a fuller explanation of this, please ask us.

How we use your data when you give us financial support

When you offer us a donation or fundraise on behalf of the charity, we will retain your contact details, if provided, and figures for the amount you have donated or fundraised, so that we can thank you and celebrate publicly your generosity and support. This does not apply if you choose to donate anonymously.

We will contact you by post to advise you of further fundraising opportunities, awareness campaigns or to let you know how your money is being spent. We do this on the basis of our ‘legitimate interest’ as a charity. If you would like to see a fuller explanation of this, please ask us.

With your consent, we will contact you by email to advise you of further fundraising opportunities, awareness campaigns or to let you know how your money is being spent. You can withdraw your consent for this at any time by getting in touch with us.

How we use your data when you sign up to the newsletter

When you sign up to the newsletter you do so through a third party, Mailchimp. Once subscribed, using your first and last name and your email address only, you will continue to receive our fortnightly digital newsletter, Focus by email. You can unsubscribe at any time.

When you order something from our online shop

When you order something from our online shop you do so through a third party, Shopify. The system collects your personal data (name, address, email address) so that we can fulfil your order and process any payment. We may retain your data to notify you of any future updates to information documents you have ordered.

You can read Shopify’s full privacy notice at checkout, before you complete your transaction.

We use your personal data on the basis of the ‘contract’ that you have with us when your purchase something.

When you attend our events

When you book a ticket for our Open Day or other events we use your personal data to send you details and administer the event. We do this on the basis of the ‘contract’ that you have with us when you buy a ticket. We will also contact you for feedback following the event and we may contact you about similar events in the future.

We will add your details to our supporters list and we will contact you by post to tell you about our fundraising and awareness-raising campaigns. We do this on the basis of our ‘legitimate interest’ as a charity. If you would like to see a fuller explanation, please ask us.

We employ professional photographers to take photographs and video at our annual Open Day, and we also take photographs at other events. We use these on our website and on social media and in our publications.

We will always let you know in advance and on the day when photographs are being taken so that you can decide if you don’t want to take part.

We use your personal data in this way on the basis of our ‘legitimate interest’ as a charity. If you would like to see a fuller explanation, please ask us.

How we use your data when you join our professional research network

We keep in touch with a network of professionals who are involved in nystagmus healthcare and research. We use publicly available information, such as from NHS clinic and university websites to invite people to join the network, and from time to time other researchers will suggest people to us who may be interested. We will always let you know where we got your details from when we contact you.

We do this on the basis of our ‘legitimate interest’ as a charity. If you would like a fuller explanation of this, please ask us.

How we use your data if you are an Eye Clinic Liaison Officer

We keep a list of Eye Clinic Liaison Officers and their clinic contact details. We get this information from publicly available sources including NHS websites. We use this information to send ECLOs information packs about nystagmus for them to use with patients, and to tell them about our work.

We do this on the basis of our ‘legitimate interest’ as a charity.  If you would like a fuller explanation of this, please ask us.

When you participate in research

We fund research, and we signpost our members to relevant research projects.

We do not conduct any health research ourselves.

Generally, participants sign up direct with the researchers, and we would only pass on your contact details by exception and with your consent.

We don’t have access to any of the personal data from the research, and only the published research outcomes are available to us.

If you do take part in research, you will be provided with more detailed privacy information by the research team.

How we keep your data safe

We store personal data on excel spreadsheets. This is accessed by our staff and, occasionally, trustees, on a need to know basis whilst administering the work of the charity.

We have contracts in place with companies who provide us with services that make sure they are also keeping the data safe.

Your Rights

You have the right to ask us for a copy of your personal data. This is called making a ‘subject access request’. If you would like to do this, please get in touch with us by email to sue.ricketts@nystagmusnet.org. There is no charge for this.

When we are using your personal data with your ‘consent’, you can withdraw this at any time.

When we are using your personal data on the basis of ‘legitimate interest’ you can ask us to stop using your personal data.

In some circumstances, you can ask us to delete your personal data. We may need to keep some information to meet our legal obligations and to demonstrate how we are using our charitable funds. If we are not able to delete your data we will explain this to you.

If any of your personal data is inaccurate or out of date, please get in touch and we will correct it.

The Information Commissioner’s Office (ICO)

The ICO is the UK’s independent regulator for data protection. It also has a role in giving advice and guidance and you can visit the Your Data Matters website to find out more about your data rights.

If you are not happy with how we are using your personal data, you can make a complaint to the ICO by following this link.