Privacy notice

The Macular Society is committed to protecting your personal information and being transparent about what information we hold. This privacy notice aims to explain, clearly and openly, how the Macular Society collects and uses your personal information. It also explains your rights in relation to your personal details and how to exercise these rights. 

About the Macular Society

We are a charity seeking to beat the fear and isolation of macular disease with world-class research, advice and support. Whenever you see the words “we”, “us’, or ‘our’, it refers to The Macular Disease Society, trading as Macular Society. We are registered as a charity in England and Wales number 1001198 and in Scotland SC042015. Macular Society is also a limited company registered in England 2177039.  

We act as a controller for your personal data under UK data protection law. We’re registered with the Information Commissioner’s Office (ICO) under reference number Z1377415. We’re also registered with the Fundraising Regulator and are members of the Association of Medical Research Charities, the PIF TICK and the Helplines Partnership.  

We routinely review this notice and update it from time to time. If we make any significant changes, we will endeavour to notify you. 

Our contact details 

If you have any questions about this privacy notice or how we use your personal information, please contact our data protection officer at dpo@macularsociety.org, call 01264 350 551, or write to Macular Society, Crown Chambers, South Street, Andover SP10 2BN. 

How we collect your information

We collect information about you in the following ways:

1. Information you give to us directly, for example when you:

• become a member  
• sign up to take part in or attend one of our fundraising, support or professional events 
• apply for one of our research grants 
• buy products in our shop 
• make a donation or tell us about your fundraising plans 
• tell us about a gift in your Will or register for our Free Wills service 
• request information about one of our services 
• request specific advice or support from our services team, for example, to receive a call from a befriender 
• contact our helpline 
• contact us or raise an enquiry via our chatbot 
• sign up to our research participant database 
• sign up to any training we offer  
• choose to share your story with us 
• take part in surveys, questionnaires or get involved with our campaigns 
• volunteer with us 
• apply to work with us 
• sign up to our any of our e-newsletters 
• visit our websites or complete a webform 
• register to play our weekly lottery 
• contact us or become involved with us in any other way not listed above. 

2. Information we receive from other organisations

We may also receive information about you from third parties if you have given them consent to share certain information with us and indicated that you wish to use Macular Society services or support us.  

Examples of this include if you completed a lifestyle survey, set up a fundraising page for us with JustGiving or Facebook, or entered an independently organised event like the Ultra Challenge or the London Marathon, or if you played our raffle or lottery (which are managed on our behalf by specialist suppliers).  

Perhaps you have given an in memory donation via a funeral director or a funeral donations online platform. If you have been named as the executor in a Will, we may receive your details in order to administer a gift left to us in that Will. 

3. Information from publicly available sources

We may collect information about potential peer reviewers for our grant rounds from Web of Science, Research Gate, PubMed and Google Scholar. Additionally, we collect information about journalists who may be interested in our work. We also use publicly available sources to ensure we understand our supporters effectively. 

Payment card information  

If you use your credit or debit card to donate to us, pay for a registration or make a purchase, we will ensure the payment is made securely, in accordance with the Payment Card Industry (PCI) Data Security Standard. All purchases and donations completed online are handled securely by our specialist payment partners. We don’t store any payment card details.  

How we use your personal information

We will explain below the purposes for which we use your personal data and our lawful bases for doing so. 

1. To provide our support services  

We use personal information to provide our support services, including:  

• advice and information services 
• mental health and wellbeing services 
• sight loss support services 
• community networks services. 

Lawful basis: To provide these services, we rely on our legitimate interests.  

Where special category information is required, such as information about sight loss, we ask for your consent. Alternatively, we’ll rely on the not-for-profit condition to handle this information in the course of our legitimate charitable activities.  

To help us evaluate our services and ensure they meet the needs of all communities, we also ask for your consent to collect demographic information, such as your age, gender and ethnicity. 

2. To carry out fundraising activities 

We use personal information to carry out fundraising activities to individuals, including:  

• to communicate with you about our fundraising appeals, events and charitable aims by email, telephone or post 
• to segment and target our fundraising communications 
• to process Gift Aid 
• to carry out due diligence checks on donations.  

Lawful basis: We rely on our legitimate interests for post and phone, and consent to email you. We carry out due diligence checks where we have a legal obligation to do so.  

3. For legacies and in memory giving  

We use personal information for legacies and in -memory giving, including:  

• to respond to enquiries about giving a gift in your Will and send further information about our free Will writing services 
• to keep in touch with people who have told us they have included us in their Will or intend to 
• to communicate with executors for the administration of a legacy 
• to thank in memory donors and next of kin and to update tribute fund holders 
• to communicate with funeral directors about a funeral collection. 

Lawful basis: For private individuals, we rely on our legitimate interests for post and phone to run the Macular Society and meet our charitable purposes and objectives, and consent to email you. For business contacts, we rely on our legitimate interests.  

4. For corporate, community and events fundraising  

We use personal information for our corporate partnerships and community fundraising activities, including:  

• to steward those taking part in community fundraising activities and events 
• to send our supporter newsletter and community events e-newsletters 
• to process donations via third-party fundraising platforms such as Just Giving or Facebook (amongst others) 
• to administer challenge events and handle fees 
• to send communications to contacts at organisations and community groups that support our work. 

Lawful basis: For communications with and donations from private individuals, we rely on our legitimate interests for post and phone to run the Macular Society and meet our charitable purposes and objectives, and consent to email you. For corporate contacts, we rely on our legitimate interests. 

5. For research participation and grant funding purposes 

We use personal information to manage a research participant database and review grant applications, including:  

• to recruit people to our research participant database and keep it up to date  
• to act as recruiter for other organisations’ research and send information to those people on the research participant database that meet the research criteria 
• to conduct online research surveys, workshops and focus groups and analyse research findings for reports or presentations 
• to review and process grant applications using advisory committees and panels.  

Lawful basis: We ask for your consent to take part in research and to match you to potential research opportunities and trials organised by third parties. We rely on our legitimate interests to review research funding applications and assess the researchers submitting them.  

6. For other purposes  

We also use personal information:  

• to provide specific membership services, including our membership magazine and governance communications 
• if you volunteer to support the Macular Society 
• when you purchase something from our shop. 

Lawful basis: We process this information where it is necessary to perform a contract or agreement with you. 

Lawful basis for processing your personal information

1. Legitimate interests

We rely on our legitimate interests when stated above to run the Macular Society to meet our charitable purposes and objectives. Our legitimate interests can also include your interests, such as when you have requested information or certain services from us, and the interests of third parties. 

Whenever we rely on legitimate interests as our lawful basis, we take care to balance our charitable purposes and objectives with your interests, rights and freedoms.

2. Consent

In many instances we will ask for your consent to use your personal information, such as to collect special category information to receive our services (for example, if you have sight loss), to join our research participant database and to send fundraising emails to you. 

3. Legal obligation

We may need to collect, process and disclose personal information to comply with a legal obligation. This includes due diligence checks we are required to perform, such as if we receive a large donation.

Understanding our supporters and fundraising more effectively 

We are committed to providing everyone who gets in touch with us with the very best experience by delivering timely and relevant communications and using our resources effectively.

From the information we hold about our supporters, we also consider their potential to become a significant donor for the Macular Society, to help Beat Macular Disease. To do this we gather and analyse information about where you live and your lifestyle, to better understand your interests and preferences.

This enables us to tailor our fundraising communications, provide staff with appropriate briefings before meetings or events, and make informed fundraising approaches. Importantly, it helps us raise more funds, sooner and more cost-effectively than we otherwise could.

This may include biographical, financial, philanthropic and corporate information from a wide variety of sources including public registers, published directories and rich lists, online news archives and publicly available information from the internet such as Companies House, the Charity Commission, LinkedIn, and other public sources. 

This analysis means we can better understand people who support us and helps us to make sure you receive the most appropriate communications from us. We carry out this processing based on our legitimate interests. We make sure our activities are proportionate and respectful of people’s rights. Where we decide to take no further action with this information, we securely delete it and only retain what is necessary to keep a record of our assessment. Alternatively, we will contact individuals to tell them about our work. 

If you do not wish your data to be used in the ways described above you can opt out by contacting info@macularsociety.org, calling 01264 350 551 or you can write to our supporter care team at Macular Society, Crown Chambers, South Street, Andover SP10 2BN. 

As a registered charity, we are subject to certain legal and regulatory obligations. We carry out appropriate due diligence of donations, including identity checks and source of funds, to help protect the charity from abuse, fraud and/or money laundering.

Potential supporters 

We may collate publicly available information about potential supporters to assess if they might be interested in supporting us. We may decide to take it no further and securely delete the information, retaining only what is necessary to record that we have already assessed them. Or we may decide to contact the individual to tell them about our work. 

We may also ask existing supporters whether they would be prepared to open their networks up to us. An existing supporter may facilitate an introduction to a potential supporter, previously unknown to us. In this scenario we would advise our existing supporter about our data protection responsibilities and ask them to ensure that the potential supporter agrees that we may contact them. Once an introduction has been made, we will provide this privacy notice and offer them the opportunity to opt out of further communications from us. 

Communicating with you

If you have provided us with your postal address we may send you postal mail, including our supporter newsletter, which will include updates on our work - the research we're funding and the information and support services we offer. We may also contact you about fundraising, campaigning, events and our shop by post.  

Where you have provided your telephone number to us, we may contact you about our work and fundraising. We won’t contact you if you are registered with the Telephone Preference Service (TPS) or if you tell us you don’t want us to call you. 

We believe we have a legitimate interest in contacting you by post or telephone, as these activities are crucial to our charitable work. However, you always have the option to opt-out of receiving any promotional materials or calls from us at any time. If you’d like to opt-out please contact our supporter care team by writing to us at our office address, emailing info@macularsociety.org or calling us on 01264 350 551. 

We will only send marketing communications by email if you have given your consent to receive these or where you have been notified and provided with a clear opportunity to opt-out. Where you have been notified and given a clear opportunity to opt-out we rely on our legitimate interests. You can unsubscribe at any time by clicking on the unsubscribe link in our marketing emails.  

Our email service allows us to track who has opened our emails and what links have been clicked on. This enables us to improve our content and to remove people from our lists if they are no longer opening our emails. If you would prefer us not to track your engagement with our emails, please unsubscribe using the link on any of our marketing emails. 

How long we keep your personal information  

We hold personal information for as long as necessary for specific purposes, as explained above. The criteria we use to make decisions on how long we keep personal information for these purposes are as follows:

• A legal or statutory obligation to keep information for a minimum period of time. 
• Charity sector guidelines and good practice. 
• An assessment of our necessity to keep personal details, balanced with people’s’ reasonable expectations. 

Personal information that we no longer need is securely disposed of and/or anonymised so you can no longer be identified from it. Some personal information may be retained by us in archives for statistical or historical research purposes although we will do this in a manner that complies with applicable data protection law. We continually review what records containing personal information we hold, and delete what is no longer required.  

Who we share personal information with

The Macular Society holds its data securely in the European Economic Area (EEA). Our digital files are stored at a data centre in the UK. Access to our IT systems is strictly limited based on each person's role in the organisation. Please note we never share your personal information with another organisation for their own marketing purposes. 

1. Our suppliers and contractors 

We use other companies to support the efficient running of the charity. These suppliers handle necessary personal information on our behalf and under clear contractual terms. For example, these suppliers support us with IT, finance, our communications by telephone, email and post, in-person fundraising, running our lottery and website maintenance. The majority of our service providers store data within the EEA. 

When a service provider is based outside the UK, the transfer of personal information is based on one of the following data transfer safeguards:  

• an EU Adequacy decision which is recognised by the UK 
• the EU Standard Contractual Clauses (SCCs) with the UK Addendum 
• the EU-US Data Privacy Framework (DPF) with the UK-US Data Bridge 
• a UK approved International Data Transfer Agreement (IDTA). 

2. Other organisations  

We share certain personal information with other organisations in these situations: 

• if you request a referral 
• when we share information with charitable trusts when applying for a grant 
• when details are shared with other agencies for safeguarding purposes  
• when we share personal details with the media (always with the consent of the person featured in the case study) 
• when we share personal details for research projects (and only when people have given consent for their details to be shared). 

Use of cookies and similar technology

Like most websites, ours uses cookies and other technologies. When you first arrive on the Macular Society website you will see a notification about cookies and be asked to give your consent for certain activities. It’s your choice to accept or decline and you may change your preferences at any time using the cookie icon. Please also see our Cookie policy. 

Social media targeting  

We use advertising tools from social media platforms including Facebook and Instagram, such as Custom Audiences and Lookalike Audiences, to show relevant adverts and understand how effective our advertising is. For example, if you visit our website, we may use that information to show you a related advert on social media. If you fill in one of our enquiry forms on Facebook or Instagram but don't go on to become a supporter, we may also show you further adverts as a reminder. We may also use information about website visits or social media advert interactions to help us reach people with similar interests who may find our services useful.  

Your information is processed under the social media platform's own privacy policy and is only used to help show or exclude you from relevant adverts. You can manage your preferences in two ways: through the cookie settings on our website or through your advertising preferences in your social media account settings. 

Your privacy rights

Under UK data protection law, you have rights over personal information that we hold about you. These are summarised below.

1. Right to be informed

You have the right to be told how your personal information will be used. This privacy notice, and other notices we provide, are intended to provide you with a clear and transparent description of how your personal information may be used.

2. Right to access your personal information

You have the right to ask us for a copy of the personal information we hold about you. If you submit a request for information, please provide details about the specific information you wish to access.

3. Right to have your inaccurate personal information corrected

You have the right to have inaccurate or incomplete information we hold about you corrected. If you believe the information we hold about you is inaccurate or incomplete, please provide us with details and we will investigate and, where applicable, correct any inaccuracies. 

4. Right to restrict use of your personal information

You have a right to ask us to restrict the processing of some or all of your personal information in the following situations: if some information we hold on you isn't correct; if we're not lawfully allowed to use it; if you believe your privacy rights outweigh our legitimate interests to use your information for a particular purpose and you have objected to us doing so. 

5. Right to erasure of your personal information

You have the right to ask us to erase some or all of your personal information. This is not an absolute right, and there may be circumstances in which we are justified in declining your request. We will always fully explain why, if this is the case. 

6. Right of portability

If we are processing your personal information (1) based on your consent, or in order to enter into or carry out a contract with you, and (2) the processing is being done by automated means, you may ask us to provide it to you or another service provider in a machine-readable format. 

7. Right to object to the use of your personal information

When we are processing your personal information based on our legitimate interests or for scientific/ historical research or statistics, you have a right to object to our use of your information. When we are processing your personal information for direct marketing purposes, and you wish to object, we will stop processing your information for these purposes as soon as is reasonably possible. 

How to exercise your privacy rights 

If you want to exercise any of your privacy rights, please contact our supporter care team at Macular Society, Crown Chambers, South Street, Andover SP10 2BN or by emailing info@macularsociety.org or calling 01264 350 551.  

We may ask you for evidence of your identity. We will endeavour to respond fully to all requests within 30 days of receipt of your request and validation of identity however, if we are unable to do so, we will contact you to explain our reasons for the delay. Please note that exceptions apply to a number of these rights, and not all of the rights will apply in all circumstances.  

For more details we recommend you consult the guidance published by the Information Commission.

Keeping your information up to date

We really appreciate it if you let us know if your contact details or circumstances change. Where possible we also use publicly available sources to keep our records up-to-date, for example, the National Deceased Register and the Bereavement Register.

How to change the way we contact you

If at any stage you do not want to hear from us, want to change your contact preferences or want to update your details, you can contact us using the details shown above. 

Any marketing email we send you will contain information about how to unsubscribe from email marketing communications. During any phone call, or email you have with us, please feel free to let us know how you prefer to be contacted. 

If you have any concerns

If you are unhappy about the way we have processed your personal information, please contact our data protection officer who will investigate your concerns. Please write to them at Macular Society, Crown Chambers, South Street, Andover SP10 2BN email dpo@macularsociety.org or call 01264 350 551. 

How to raise a complaint

If you believe the way in which we’ve handled your personal information may have infringed data protection law, you can raise a formal complaint using the contact details above. Please provide as much information as possible about the nature of your complaint and the outcome you’re seeking. 

We’ll acknowledge we’ve received your complaint as soon as possible and aim to provide a full response within 30 days. Should a complaint require a more detailed investigation, we’ll let you know within 30 days when you can expect a response from us. If you have a complaint about any other matter, which is not related to data protection, please contact us and we’ll endeavour to resolve this as soon as possible. 

Raising a data protection complaint with the Information Commission (ICO) 

In most cases, the Information Commission is likely to expect you to go through our complaints process first. If you’re unhappy with our response, you can raise a complaint with the regulator using the following details: ICO data protection complaint form, or call the Information Commission helpline on 0303 123 1113. More information is available on the ICO website. 

Approved by: The Data Governance Group
Date: September 2026
Review: September 2029