PIP-UK Privacy Statement

Overview: What you need to know in brief

pip-uk.org is the website of PIP-UK Poland Syndrome Charity (PIP Parents Information Portal) (PIP-UK). This means that PIP-UK are the “Data Controllers” of this website. We operate this website to communicate with our members and raise awareness of Poland Syndrome (PS) and support those affected by PS. We use the lawful basis of consent, legitimate interests and compliance with a legal obligation for processing personal data. We use a limited amount of third parties that process personal data either directly on our website or indirectly through external lines to the service providers own webpage.

Preservation of your privacy is important to PIP-UK and we are committed to letting you know how we use your personal information, keeping personal data safe and secure and to making only responsible use of your data. We ask you to read this Privacy Notice and Cookie Notice in full prior to your engagement and if you have any questions or concerns contact us

This notice may be updated from time to time: Last updated July 2021

Full Notice

1.Who we are

pip-uk.org is the website of PIP-UK Poland Syndrome Charity (PIP Parents Information Portal) (PIP-UK). This means that PIP-UK are the “Data Controllers” of this website.

References to “we”, “us”, “you” or “our” in this privacy statement are references to PIP-UK.

PIP-UK is a charity registered in England and Wales, registered charity number: 1188941.

This statement relates to the various contact types associated with PIP-UK, including members, individual contacts of members, supporters.

2. Why we have a website

We have two main purposes for operating this website: Communication and Awareness Raising

Communication

We use this website to communicate information about our organisation, services, events and about information that may be of interest to our members and the wider public. We also operate this website to enable our users to communicate with us. In addition, we maintain a presence on social media platforms such as Facebook, Instagram and Twitter.

Awareness Raising

We use this website to further our mission of raising awareness for PS, supporting people with PS and connecting with medical professionals.

3. What personal data we collect

In order to operate our services and this website, we must process personal data. In all instances, we endeavour to collect the minimal amount of information necessary to achieve our purposes. We use the lawful basis of consent, legitimate interests and compliance with a legal obligation for processing personal data.

(a) Membership

PIP-UK is membership organisation and as a result, we collect details about people when they register as a member. In addition, we also ask for some basic personal information from you as an individual, in the following situations:

  • If you contact us via email, website or social media.

  • If you sign up as a supporter of PIP-UK.

This information will include your name and email address. We also may ask for some non-personal data (e.g. how you heard about PIP-UK or the services you are interested in). You are responsible for making sure you give us accurate and up to date information.

Please note: If you provide information on behalf of another person, you will need to tell them how to find this privacy statement and make sure they agree to us using their information for the purposes set out in it.

(b) Services

We will also collect personal data when you access the services we offer. Depending on the service you use, the way we collect data is including but not limited to the following:

  • Downloadable resources – name and email address.

  • Support line – name, email address and query details.

  • Events sign up – name, email address, photograph consent for all events and payment details for paid events only.

  • Online feedback or research surveys – name and email address.

  • Poland Syndrome Community Register – name, email address, home address, phone number, joining for you or family member.

In all instances where we collect personal data from individuals it is to deliver our charitable services.

4. How we use your personal data

We use your personal information to manage your membership account on our customer relationship management system and/or to provide the services you have requested from us.

(a) Marketing

Marketing our events and services is important for our work. When you become a member, and at other times, you are invited to opt-in to our marketing communications. You can unsubscribe at any time from these communications without affecting your membership status (see section 5 below). If in any case, your specific, unambiguous consent is not received, we will not send you marketing information.

Our email marketing (which includes some but not all member communications) may be trackable at an individual level, allowing us to determine, for example, opens and link clicks. This information is generally used to help assess the effectiveness of communications so that – for example – we can send you more of what you like.

We never share your information with third parties for marketing purposes without asking for specific, unambiguous consent. For example, some of our events are delivered alongside a relevant partner (e.g. community voluntary service organisations). On some occasions, we might ask you if we can share those details with the partner. This will be very clear on the event sign up form. If in any case, this consent is not received then your data will not be shared.

From time-to-time, we may use your feedback and attribute it to you (e.g. by quoting a name and organisation alongside the feedback). We take this information from the surveys you are asked to complete and we do so to talk about our services publicly or demonstrate the impact of the charity to key stakeholders e.g. funders. We never share your information without asking for specific, unambiguous consent. This will be very clear on the relevant forms you complete. If in any case, this consent is not received then your data will not be shared.

(b) Member communications

As a member of PIP-UK, you will receive regular, relevant communications from us. Signing up as a member or supporter includes automatic subscription to these communication channels. From time to time, we may also contact you to ask you to engage with various campaigns we run on behalf of the Poland Syndrome Community.

You have the right to withdraw your consent from receiving our communications at any time. For more information, see section 5 below. You can unsubscribe from communication channels without affecting your membership status with PIP-UK.

(c) Sharing personal data

We never share your information with third parties, unless it is necessary to deliver the service you have requested from us. Primary examples of this include, but are not limited, to:

  • Sharing data with our event venues for security and safety purposes, or to ensure our accessibility obligations are met.

  • Sharing data with our external event staff or volunteers, including our trainers.

  • Sharing your data with an expert referral partner if you have contacted our support line.

5. Your Data Subject Rights

PIP-UK as an organisation is committed to ensuring the rights and freedoms of our website users and members are respected and that you as a data subject are enabled to exercise your rights. Under data protection law, you have specific rights including: 

(a) To update your data

If you wish to access or rectify personal data that has been collected (see section 3 for examples) or if you wish to receive any personal data we hold on you, please contact us  and we will respond to your request within one calendar month.

(b) To delete your data

If you wish to have your data removed entirely from our records, please contact us and we will respond to your request within one calendar month.

Please note that for legal reasons we are required to keep financial/transactional records for a minimum period of six years from the end of the financial year in which the transaction was made.

(c) To move your data

If you wish to have your data transferred from PIP-UK to another organisation, please contact us and we will respond to your request within one calendar month.

(d) To withdraw your consent

If you wish to withdraw your consent from receiving our email communications, this can be done by clicking ‘update your preferences’ or ‘unsubscribe’ at the bottom of an email you receive from us.

Please note: This does not apply to emails sent by the Individual emails from the PIP-UK team which relate directly to the service you have requested, these emails may not have an unsubscribe function. However you can reply to these emails at any time with any concern or questions about your personal data.

(e) To object to, or restrict data processing

If you object to the processing of your personal data, or wish to restrict the way in which it is processed by us, please contact us and we will respond as soon as possible. Please note that this may affect our ability to deliver our services to you.

6. How long we retain your data

We retain your personal data for as long as is considered necessary for the purpose for which it was collected (including as required by applicable law or regulation, typically 6 years). In addition, personal data may be securely archived with restricted access (and other appropriate safeguards) where there is a need to continue to retain it.

We will ask you on a regular basis to update your membership details with PIP-UK.

Financial records, including those of event payments and refunds, will be retained for a minimum period of six years from the end of the financial year in which the booking was made in order to comply with statutory obligations.

7. How we keep personal data safe

The PIP-UK website processes a small amount of personal data. However, we take our duty to protect this data very seriously and have in place technical and organisational safeguards to do this.

Examples of technical safeguards include: regular security testing; website backups; disaster recovery systems, cryptography hash functions, autolocking, lock-outs and data restoration

Examples of organisational safeguards include: access controls to personal data; staff training; organisational policies, procedures, and handbooks.

To the best of our ability, we will keep any personal data safe. However, no system or transmission over the Internet is 100% secure. This means that we are unable to absolutely guarantee the security of personal data.

If you become aware of something that gives your concern about the security of your personal data, please contact us.

 

8. Use of Third Parties

As an organisation PIP-UK use a small number of third-party service operators to host our website, for our CRM and to enhance the experience of our website. The table below provides information about the service, why we are using it, additional information and links to their Privacy and Cookie notices. Please be aware that when you click these links, you are leaving our website and we have no control over these third-party websites use of personal data or cookies.

Please note: Some of these companies may transfer data outside the EU/EEA. In such cases additional safeguards such as Standard Contractual Clauses and Data Processor Addendums are in place. 

 

Additional Information

Links to Service Privacy and Cookie Policy

Eventbrite

This service enables you to book events and programmes with us

You can use our contact form to contact us. 

Eventbrite Privacy Policy

Eventbrite Cookie Statement

Mailchimp

This service enables you to subscribe to our newsletter

Mailchimp Privacy Policy

Mailchimp Cookie Statement

Salesforce

This is our CRM system to enable us to properly manage our membership data

This service provides a core function and you are not able to opt out without affecting your membership status.

Salesforce have extremely robust security measure and data protection features to protect personal data.

Salesforce Privacy Policy  

WordPress

This is the service that hosts our website

This is not an option

WordPress Privacy Policy

Gmail

This is the service that hosts our emails and documents

This is not an option

Google Privacy Policy

Microsoft

This is the service that hosts our documents

This is not an option

Microsoft Privacy Policy

9. Our Social Media Presence

We have a presence on social media platforms such as Facebook, Instagram and Twitter. These accounts are used to post information such as notices about our events and to promote the activities of our members by reposting appropriate content. Occasionally, we may run a competition or promotion through these channels.

Please be aware that any responses to our content on these platforms is done through your own choice, at your own risk and without expectation of privacy. We say this because we are not able to control how other users on these platforms may act. We are also not able to control how these platforms may use your personal data nor do we endorse how these services use personal data.

Below lists our social media account platforms with links to their privacy and cookie notices. We advise you to read these policies in advance of using their services. Please be aware that when you click these links, you are leaving our website and we have no control over no do we endorse these third-party websites use of personal data or cookies.

Facebook

Facebook Privacy Policy

Facebook Cookie Policy

Twitter

Twitter Privacy Policy

Twitter Cookie Policy

YouTube

Google Privacy Service

LinkedIn

LinkedIn Privacy Policy

LinkedIn Cookie Policy

Instagram

Instagram Privacy Center

10. Questions or complaints

If you have questions or a complaint about the way your personal data has been processed by PIP-UK, please contact us and we will look in to this for you as a matter of priority.

If you wish to take your complaint further, you can contact the Information Commissioner’s Office (ICO), which is the independent regulatory authority who exist to uphold information rights in the UK. For more information, visit their website or call their helpline on 0303 123 1113.

Updates to this privacy statement will appear on this website. This privacy statement was last updated on July 2021.