A charity registered in England and Wales (no. 1149646).
Updated on 14 October 2025
This privacy statement provides information about the personal information that Prurigo Nodularis International (PNI) collects, and the ways in which PNI uses that personal information. This privacy statement aims to cover all of our activities.
PNI may change this policy at any time in line with legislative changes or changes to the policy of the organisation. Please check our website from time to time to ensure you are aware of any changes.
PNI adheres to the Principles of the General Data Protection Regulation (GDPR).
In this policy document:
“we” or “PNI” means Prurigo Nodularis International;
“you” means any person(s) about whom we collect non-personal and/or personal information.
Our Privacy Principals
PNI collects data for four main reasons:
- To allow us to deliver our projects effectively to our beneficiaries in the Prurigo Nodularis community.
- For administrative purposes, allowing us to comply with financial regulation, to reimburse expenses to beneficiaries, and to monitor the success of our projects in-line with the terms of existing grant agreements.
- To understand the impact of Prurigo Nodularis on patients, and the effect of our projects on patients. This allows us to improve our services and subsequently the lives of patients.
- To allow us to engage directly with those individuals have raised, or are interested in raising, money for the charity.
We aim to contact you only with information that you have asked for, either by consenting to be part of our mailing lists, or by signing up for a specific project. In the latter case we will not contact you outside the life of that project without your specific consent to do otherwise. You can opt out of receiving information at any time.
We will only collect data from you that is needed to deliver our work and aim to keep that data for a limited period. We will never sell your data to a third-party organisation, and never share your information for marketing purposes. We will only pass it on to a third-party organisation where it is necessary to deliver our work (for example providing an event venue with a list of attendees). We will make it clear when we need to do this, for example, we often use third party platforms such as Kit and Eventbrite to help us deliver our services.
PNI will take all reasonable care to protect your personal information through secure working practices and processes. In line with the GDPR we will provide you with a summary of information we hold about you upon request and will remove your information from our records upon request if we are not legally required to hold it.
The following information provides a detailed breakdown of all the data we collect, how we hold it and use it, and the reason behind it. If you would like to learn more about our privacy policy or our work, please contact us using info@prurigonodularis.org at any time.
What information do we collect?
We collect several different types of information. In general we collect and store information about those who engage with one of PNI’s projects. We collect this data in order to deliver the project to you (the beneficiary), to track the success of the project, to measure our impact as a charity, and to deliver financial transparency to both our funders and the charity commission. We work to secure explicit consent to contact you about any unrelated events, and to share your information with any additional party.
1. Your browsing
Lawful basis – Legitimate interest
We collect basic information about the users of our websites. Whenever you access our websites or download information, the web server automatically records the following information: the date and time you accessed our website, how long you were on the site, your internet domain name and the internet browser you use.
Some information may be collected when you use our website, including information such as your IP address. We also automatically receive and record information on our server logs in order to use services like Google Analytics. This information is used to help us improve our website, to increase traffic to our sites, and raise the profile of the charity.
To make use of Google Analytics, our websites use cookies. Any YouTube videos embedded in our websites also make use of cookies. A cookie is a series of characters that is generated by our website and stored on your computer. The cookie does not collect or contain personal information about you but allows you to keep logged in and records your use of our website. The cookie does not track your movements on other websites. YouTube may collect personal data through cookies used on their website. To view their privacy policy, click here. You can adjust the settings on your computer to decline any cookies if you wish. This can be done by activating the ‘reject cookies’ setting on your computer.
2. Your contact with us
Lawful basis – Legitimate interest
If you contact us by e-mail, or by letter, we retain a record of your contact to help us respond to enquiries. We only collect this information if you provide it to us and we do not hold your information for longer than is necessary.
3. PNI mailing list
Our periodic mailing list is open for anyone to join, and all require your consent for us to contact you and hold your data. We also use short term project specific mailing lists – these allow us to provide information about a specific project to those involved with it. If you sign up for a project we will add you to one of these lists in order to fulfil our obligation to you, but will not contact you about other work, or hold your data longer than necessary. Specific details about any project mailing lists are provided when we describe the use of data for those projects below.
4. Periodic mailing lists
Lawful basis – Consent
We hold contact details for PNI’s regular newsletter mailing list. PNI’s mailing list is administered through Kit, who store the name and email address of all individuals on the mailing list and track information on engagement with the messages sent. PNI holds a digital copy of all mailing lists.
Only individuals who specifically opt in to receive a mailing list, either through our sign up form or a specific question within event and project registration, will receive messages and have their details stored. You may choose to stop receiving either mailing list at any time through a link provided at the end of all mailing list emails, as part of any event registration process, or by contacting us at info@prurigonodularis.org.
5. Fundraising
Lawful basis – Legitimate interest and Consent
We collect the personal information of individuals who are actively fundraising for PNI. This is collected to allow effective registration, to support you in your fundraising efforts, and to monitor success. We will not contact you about other things without your explicit permission.
We will not contact a donor or fundraiser without your explicit permission.
6. Focus groups and research projects
Lawful basis – Consent
If you volunteer to take part in one of our research projects, with your consent we will store your contact information and any recordings (for example, recordings of interviews or focus groups) along with written notes from the recordings. We will not identify individuals within any resultant publications without securing explicit consent first.
7. Expense claims
Lawful basis – Administration
In the event that PNI reimburses expenses for an individual attending or assisting with an event or project, we will collect personal data in order to process such payments. We will securely store this information in order to meet the needs of our accounting processes.
8. Social media
PNI is active on Facebook and LinkedIn, we will endeavour to answer messages directed to us through these sources. All messages sent to PNI in this regard are governed by the privacy policies of the chosen platform.
9. Our staff and volunteers
Lawful basis – Administration
We hold personal information about our trustees, advisory board members and volunteers. We also hold information on recent volunteer applicants.
How long do we keep your information?
We keep your information for as long as is necessary to deliver any associated projects effectively for you and track our charity impact. This will normally amount to at least one year, but specific guidelines for each of our projects can be found above. In many cases our funding agreements will require that we retain documentation relating to project finances, attendance, and delivery for a period of five years. Your data will be retained securely in such situations to meet the obligations of our funders and good financial practice.
Your rights
You may ask us to destroy any personal information that we hold on you so that you receive no further information or contact from us. In this circumstance, if you are currently registered for an event or project we will contact you to confirm your wish to continue involvement, and if so remove your data subsequent to completion of the programme. If you have taken part in a research project, your research information will be kept for 3 years or as otherwise detailed to you in the project information sheet, after the end of the project then destroyed securely.
You may ask to have a copy of the information we hold about you and/or your organisation and to amend, update, add to or delete it at any time. Should you wish to restrict the use of your personal information, please contact us by email at info@prurigonodularis.org or in writing at the address supplied on the PNI website.
Who has access to your information?
Our team have access to your personal information. If you provide information through involvement with a specific event or project, that information will also be shared with any organisations that are listed as a project collaborator or co-organiser. Note, a project sponsor or funder is not considered a collaborator and would not receive data through these means. Finally, some information may be shared with event venues to ensure that your needs are met on the day.
As detailed above, we may use third parties to provide services on our behalf, including Kit and Eventbrite. Those parties only collect and hold the information they need to deliver the service, though data is held in accordance with their own privacy policies.
If you have taken part in a research project, we will not tell anyone you have taken part and we will not share your information with any third party without your consent. Any collaborators with access to your information will be explicitly named when you give your consent.
We may disclose personal information if we receive a complaint about any content you have posted or transmitted to or from one of our site, if required to do so by law or if we believe that such action is necessary to protect and defend the rights, property or personal safety of PNI, any child or vulnerable adult, our team, or third party. Except as indicated above we will not use or transfer this data to any third parties without your explicit consent permission.
Can you access the information we hold about you?
Yes, you have the right to access information stored about you by Prurigo Nodularis International. You need to write to us at the address below or email us at info@prurigonodularis.org. We will then provide you with the following information:
- What personal data is stored
- The purposes for which your data is being processed
- Who has access to your data
What security measures do we have?
We have implemented technology and policies to protect your privacy from unauthorised access and improper use and will review these measures on a regular basis. While we cannot ensure or guarantee that loss, misuse or alteration of data will not occur, we shall endeavour to prevent this.
Links to other websites
PNI’s website may contain links to selected websites which we feel may be of interest. Please note that once you use one of these links to leave our website, we do not have any control over that other website. Please exercise caution and refer to their privacy policy and/or terms & conditions of use as we cannot be held responsible for the protection or privacy of any information you provide to a third party.
Any questions about privacy?
If you have any questions or concerns about how we protect your personal information, please contact us.
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The Gateway
85-101 Sankey Street
Warrington
Cheshire WA1 1SR
United Kingdom
