Your privacy

This website is operated by Action for Pulmonary Fibrosis (APF). We take the security of your personal data seriously and ensure that it is kept securely, in accordance with requirements of the current data protection regulations.

Why does APF need personal information?

We use personal information to ensure we provide the best possible support to everyone who needs us. It helps us to contact you in the most appropriate way with information that is important to you.

You are under no obligation to provide us with personal data but ultimately, your information will help us to give you the best possible service.

Your data is important to us. All information collected is confidential and handled in accordance with this Privacy Policy.

What information do we collect?

Information we collect may include:

  • contact details including name, address, email address, telephone number and contact preferences
  • bank account details for setting up a regular direct debit
  • credit card details for processing credit card payments
  • taxpayer status for claiming Gift Aid
  • date of birth, age, and/or gender, where appropriate (e.g., where registering for a challenge event, such as a race)
  • information about your interactions with us through email, SMS, post, on the phone or in person (i.e., the date, time, and method of contact)
  • details about donations you make to us, events or activities that you register for or attend and any other support you provide to us
  • If you are a minor, we may collect the name and contact details of a parent or guardian and, where appropriate, the name and location of your school
  • Any other relevant information you share with us about yourself, including your interests and your employer
  • If you are enquiring about our services, we may ask you details of a sensitive nature about your health and mental wellbeing to ascertain how we might best be able to support you

How do we collect your information?

We do not buy data from 3rd parties.

We collect information about you directly whenever you interact with us. For example, when you contact us regarding our support line, register as a supporter, send or receive information, engage with our social media or make a donation to us, you may provide us with your personal information.

We may also receive information about you when you interact with third parties with whom we work. For example, where you’ve made a donation to us through a third-party website (e.g., Just Giving, Virgin Money Giving and Facebook) and given them permission to share your information with us.

How is this information processed and stored?

We securely store and process this information on a database and computer file system. We make sure nobody has access to your information who shouldn’t have access to it.

When you use the support line callback request form on our website, your submitted details are emailed to us and also processed and stored on the servers of our hosting partner Webflow ( Your information is saved in our account, and we are able to control the data and respond to your requests as described below.

When you use the donation and fundraising registration forms on our website your submitted details are processed and stored on the servers of our supporter management partner Blackbaud ( Your information is saved in our account, and we are able to control the data and respond to your requests as described below.

How long is the information stored for?

Under new data legislation, everyone has “the right to be forgotten”. We will only keep your data as long as is reasonable and necessary.

We will retain your information for 7 years to comply with legislation surrounding gift aid but if we have had no interaction with you after this time has passed, we will delete all personal information we store on you.

Do you share my personal data with any 3rd parties?

We will never sell your details to other organisations.

We use 3rd party services such as printers and email service providers to assist with mailings and we provide them with encrypted files of names/addresses/email addresses. We enter into contracts with all these service providers that require them to comply with data protection laws and to ensure that they have appropriate controls in place to protect the security of your information.

If you engage with our telephone based support, we may use your basic details to contact organisations on your behalf. We will always ask your permission before sharing sensitive data.

If you take part in one of our fundraising activities we may share personal details with third-party event organisers to ensure your safety and that your needs are met.  We enter into contracts with these organisations to ensure your data is secure.

We share anonymised data, without names, addresses or personal details, to funders or potential funders to demonstrate the impact of our services.

How do we use your information?

We may use your information in a number of ways to fulfil a contractual or legal obligation, or where we feel it is in your vital interests, including:

  • to gain a full understanding of your situation so we can develop and offer you the best-possible personalised services
  • to make sure we have the right information when you contact us again, so you don’t have to keep repeating yourself
  • to help us plan our services, use our resources wisely, measure our work, and ensure it’s of the highest standard
  • to provide ongoing support and advice where we feel it is in your best interests
  • to invite you to participate in voluntary surveys or research
  • to process donations we may receive from you (e.g. to rectify an error on a direct debit form)
  • to promote fundraising activities including appeals, raffles, legacy fundraising, payroll giving
  • to respond to queries you have made about events or challenges or fundraising activities you are interested in
  • to communicate with you about an event you have signed up for
  • to send you fundraising packs, collection boxes and merchandise you have requested to assist you in fundraising for us
  • to invite you to events we feel you may be interested in attending, based on your previous interests and activities, in order to support our work
  • to invite you to participate in challenge events we feel you may be interested in, based on your previous interests and activities
  • to contact you where you have been identified as a contact person for an organisation such as a support group or hospital
  • to analyse and improve the content and operation of our website
  • to analyse and improve our internal business processes
  • to analyse the personal information we collect about you and use publicly available information to better understand your interests, preferences and level of potential donations so that we can contact you in the most appropriate way and to ensure that we do not send you unwanted communications
  • where we are required by law to disclose or otherwise use your information

If you have provided us with your postal address or telephone number, we may send you information about our work or other communications of the kinds described above by direct mail or contact you by telephone unless you have not consented to be contacted in this way.  We provide information about how you can change your marketing preferences below.

In some circumstances, we may feel we have legitimate interest to contact you when you have not specifically given us permission to do so. We take your preferences seriously so we have given a lot of thought to how you might feel receiving communications like these. In some cases, we feel it would be strange not to contact you e.g. to thank you for a donation. In other cases, we feel we have a legitimate interest which is not overridden by your personal preferences. We may still contact you in the following circumstances:

  • to thank you for a donation
  • to express sympathy when donations are made in memory of someone special
  • to provide you with information about our services where we feel you might be interested or benefit from them, including but not limited to:
  • a call from our support line
  • as a contact for the media to share your story
  • signpost you to a local support group
  • to send you updates about our services, signpost you to support groups or share any updated information from our website
  • to ask for feedback on an activity you have participated in
  • to invite you to take part in upcoming fundraising activities you might be interested in
  • to invite you to involve your company in fundraising activities, based on information you have provided us about your work and on previous interests and activities, where you have provided us with your corporate details
  • to enquire about trust fund opportunities, based on information you have provided us about your involvement with a trust
  • to ask you about gift aid on a donation you have made
  • to communicate with you about your regular giving
  • to ask your permission to use your story in our marketing to demonstrate the value of what we do. We will always contact you personally to specifically ask your permission for this and discuss which details you would be happy to see included

Do we process ‘sensitive’ personal information?

If you enquire about our services, we collect information about your health, physical and mental welfare in order to tailor the service we provide to best suit you.

We collect information about ethnic background, religion, age, marital status, and sexual orientation in order to track which sections of the population we are reaching.

We collect sensitive personal information where we need this information to ensure that we provide appropriate support to enable you to participate in events or signpost you to use the right service.

Can I have access to the information you hold about me?

Yes. You can make a written request to access all the personal information we hold about you.

How can I withdraw my consent to processing my personal data?

If you do not wish us to use your personal data for marketing purposes, you can use the relevant box on our forms to indicate your preferences when you initially provide us with your details.

At any subsequent time:

  • you can indicate that you do not wish to receive our marketing emails by clicking the “unsubscribe” link which we will always provide
  • you can ask us to stop sending marketing by post by following the instructions provided in the letter
  • if you wish to change the way we contact you (by email, post, text and phone), you can update your contact preferences by emailing or writing to us using the contact details at the end of this page.

If you have indicated that you do not wish to be contacted for marketing purposes, we will maintain your details on a suppression list.  However, we may still need to contact you for administrative purposes, including (but not limited to):

  • Processing a donation you have made and any related Gift Aid
  • Providing you with the information you need in order to participate in an activity or event for which you have registered
  • Explaining and apologising where we have made a mistake

If your contact details have changed, you can always update or correct the information we hold about you by contacting the Data Protection Officer at the address listed above.

Similarly, if you have more specific requests about how we use your data, you can contact the Data Protection Officer.

What other data protection rights do I have?

You can make a complaint or raise a concern about how we process your personal data by contacting our Data Protection Officer.  In some circumstances, you have the right to object to our processing of your personal data or to stop us from continuing to make active use of personal data that we retain in our records. Please see our complaints policy here.

If you are not happy with how we have handled your complaint, you can contact the Office of the Information Commissioner, which oversees the protection of personal data in the UK, or the Fundraising Regulator, which is responsible for overseeing fundraising activities carried out by charities in the UK.  You can contact them without contacting us first.

Your credit/debit card information

If you use your credit or debit card to donate to us, we pass your card details securely to our payment processing partner as part of the payment process. We do this in accordance with the Payment Card Industry Security Standard, and don’t store the details on our website or databases.

Who do I contact about the information you hold on me?

The Data Protection Officer
Stuart House, St John’s Street, Peterborough PE1 5DD

If you let us know about any information that is inaccurate or incorrect, we’ll correct it.

Storage of data on your device and visitor tracking

Our website uses Web Storage and Cookies to store content information and preferences in your browser. These technologies allow website owners and their partners to, for example, collect information about website use, visitor behaviour and remember a visitor’s preferences. All such information is not personally identifiable.

To see list of all cookies on this website, and to make your choices please see:

We use Google Analytics to analyse the traffic to our site and to review the statistics regarding our visitors. To do this, cookies are placed on your computer to “remember” what a user has done on previous pages / interactions with the website. No personal data is collected and visitors are not tracked across multiple sites. Read more about Google’s Privacy Policy. To opt out of being tracked by Google Analytics across all websites visit