• Skip to main content
  • Skip to header right navigation
  • Skip to after header navigation
  • Skip to site footer
Pulmonary Fibrosis Trust

Pulmonary Fibrosis Trust

Every breath matters

  • About the Pulmonary Fibrosis Trust
    • About
      • About the Pulmonary Fibrosis Trust
      • Trustees
      • Ambassadors
      • Research
    • Contact us
  • Support
    • About Pulmonary Fibrosis
      • What is pulmonary fibrosis?
      • Diagnosing Pulmonary Fibrosis
      • Monitoring and management
      • How to help yourself
      • Allowances available
    • Support available
      • Emotional support
      • Equipment funding
      • Caravan holidays
      • Useful links
  • Get involved
    • Donate
    • Fundraising
      • Fundraising stories
    • Merchandise

01543 442 191

[email protected]
DONATE
  • About the Pulmonary Fibrosis Trust
        • About the Pulmonary Fibrosis Trust

        • Latest updates

          • In memory of May Arcari
          • GKA Idiopathic Pulmonary Fibrosis
          • Holly walks 7,700 every day for a month
          • Fundraising ball
          • Goodbye AmazonSmile
        • About
          • About the Pulmonary Fibrosis Trust
          • Trustees
          • Ambassadors
          • Research
        • Contact us
  • Support
        • Support

        • About Pulmonary Fibrosis
          • What is pulmonary fibrosis?
          • Diagnosing Pulmonary Fibrosis
          • Monitoring and management
          • How to help yourself
          • Allowances available
        • Support available
          • Emotional support
          • Equipment funding
          • Caravan holidays
          • Useful links
  • Get involved
        • Get involved to help others

        • Be inspired

        • Every donation helps

        • Donate
        • Merchandise
        • Fundraising
          • Fundraising stories

Privacy policy

Policy statement

The Pulmonary Fibrosis Trust (PF Trust) is committed to protecting the privacy and security of your personal information. This Privacy Policy gives you detailed information on when and why we collect your personal information, how we use it and how we keep it secure.

GDPR

The General Data Protection Regulation (GDPR) is a new piece of EU legislation that came into force on 25th May 2018. The core intent of GDPR is to give individuals more control over the use of their personal data and how data is stored. This legislation along with the Data Protection Act 2018 (DPA), gives more rights to you as an individual and more obligations to organisations holding your personal data.

One of the rights is a right to be informed, which means we have to give you more information than previously about the way in which we use, share and store your personal information.

Data Controller

The Pulmonary Fibrosis Trust is the Data Controller, please see below our full contact details:

Main Office:

Pulmonary Fibrosis Trust
℅ Executive Business Support
City Wharf
Davidson Road
Lichfield
Staffordshire
WS14 9DZ

01543 442 191

[email protected]

Registered Charity No: 1149901

How we collect your personal information

We collect your information when you decide to interact with us, sign up to our mailing list, make a donation, undertake fundraising efforts and receive support services and products. We also collect information about your computer to look at how our audience use our website, so that we can offer the best possible experience. Information collected includes your IP address, geographical location, browser type and version, operating system, referral source, length of visit, page views and website navigation paths.

Purpose and lawful reasons for processing your data

For all goods and services donated by PF Trust to patients or carers, we will process your data to ensure the correct delivery of those goods and services. The lawful reason for processing data in these cases is contractual and will include:

  • Donated products or services to you by PF Trust
  • Received donations

We may process your data for emotional support requests and general enquiries. We will only process your data in this regard and contact you if we have obtained your consent to do so. The lawful reason for processing data in this case is consent and will include:

  • Emotional support
  • General enquiries – such as donating and fundraising information

We may contact you from time to time regarding information you may be interested in from the PF Trust or related organisations. We will only process your personal data in this regard and contact you if we have obtained your consent to do so. The lawful reason for processing data in this case is consent and will include:

  • Health, research and medication news
  • PF Trust news
  • Newsletters
  • Surveys

We may process data which falls within the special categories of data. The below list details the data which are processed that falls in that category:

  • Health information – for any product or services requests. This information will only be used with your consent and to ensure we are able to deliver any special requirements you may have. The lawful reasons for processing these data are consent and explicit consent as given by you, the data subject.

Data sharing

PF Trust will never share, sell or trade your personal information to any third parties for marketing purposes.
We currently use other organisations to manage our activities: Executive Business Support (EBS) for our administrative support. EBS has access to your data in order to perform services on our behalf. We make sure anyone who provides a service for us enters into an agreement with us and meets our standards for data security. They will not use your data for anything other than the clearly defined purpose relating to the service that they are providing.

We may share your data with representatives or volunteers of PF Trust for the purposes of providing a product or service request approval. The data shared with these individuals is limited only to individuals that meet our standards for data security. Regular training and auditing is conducted to ensure that these aims are met.

If you have applied to PF Trust for funding, your data will be shared with selected suppliers that provide such product or service, however, your data will only be shared with your explicit consent.  Suppliers frequently used by PF Trust are Pure O2 (oxygen suppliers), CareCo (mobility equipment) and Associated Stairlifts. All stated suppliers have a signed agreement with the PF Trust ensuring their data security is to PF Trust’s security standards.

Types of information we collect

We only collect the information that is necessary to carry out our business and provide a particular service that you have requested, and to keep you informed. This includes:

  • Demographic information (Name, address, contact details, e-mail address)
  • Health information
  • Equipment, merchandise and service requests
  • Funding decisions
  • Fundraising activity
  • Donation activity
  • Support needs
  • Communication records

How your information is stored

Your information will either be stored on our website, in a restricted secure server environment or on cloud based software that we have verified as suitable and which meets our security requirements. Only individuals that need to will be allowed to access your data and this access is limited to the requirements of the individual’s task. We ensure that all individuals, volunteers and staff members of any third party have been trained to understand their requirements in keeping your data safe. Any hard copy paper records which may be sent to the organisation, such as application forms, are transferred into electronic format.  All original hard copies are securely disposed of unless otherwise stated. All sensitive data, such as medical evidence of diagnosis, is securely disposed of or returned to the sender where requested.

How long is your information kept

We will only keep your data for as long as it is necessary, the majority of information will be retained for 7 years to coincide with financial requirements.  For areas that you have withdrawn your consent or asked for your data to be removed, it will be destroyed as soon as possible within 1 month. If we decide not to destroy your data, we will inform you as to why we have made this decision.

Your choices

You should find it easy to access and amend the personal information that we hold on you. If you wish to update information or communication preferences please contact us by telephoning 01543 442191 or emailing [email protected].

Your rights

You have the following rights as an individual:

  • The right to be informed
  • The right of access
  • The right to rectification
  • The right to erasure
  • The right to restrict processing
  • The right to data portability
  • The right to object
  • Rights in relation to automated decision making and profiling.

If you have any queries or concerns regarding the use of your data and the above rights, please contact us by telephone on 01543 442191 or by email [email protected].

The supervisory authority is the ICO and comments and concerns can be raised with them Further information on data protection regulations and laws can be found: https://ico.org.uk/for-the-public

Join the PF Trust Community today

Receive our newsletter, research updates, personal stories and more.

Our community is for ALL those affected by pulmonary fibrosis. Whether you are a PF/IPF sufferer, family or friend, healthcare professional or interested in raising awareness of pulmonary fibrosis, you are all welcome.

Join the PF Trust Community
QUICK LINKS
  • Home
  • Contact us
  • Join the PF Trust Community
  • Privacy Policy
  • Donate
CONTACT

[email protected]

01543 442 191

Pulmonary Fibrosis Trust
c/o EBS Ltd
City Wharf
Davidson Road
Lichfield
Staffordshire
WS14 9DZ

Pulmonary Fibrosis Trust is a Charity registered in England with number 1149901
Copyright © 2023 · Pulmonary Fibrosis Trust · All Rights Reserved

We use cookies on our website to give you the most relevant experience by remembering your preferences and repeat visits. By clicking “Accept All”, you consent to the use of ALL the cookies. However, you may visit "Cookie Settings" to provide a controlled consent.
Cookie SettingsAccept All
Manage consent

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary
Always Enabled
Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.
CookieDurationDescription
cookielawinfo-checkbox-analytics11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checkbox-functional11 monthsThe cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checkbox-necessary11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-others11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-performance11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
viewed_cookie_policy11 monthsThe cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.
Functional
Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
Performance
Performance cookies are used to understand and analyze the key performance indexes of the website which helps in delivering a better user experience for the visitors.
Analytics
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
Advertisement
Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
Others
Other uncategorized cookies are those that are being analyzed and have not been classified into a category as yet.
SAVE & ACCEPT