Privacy Policy

PCD Support UK provides information and advice to anyone who wants to know more about the condition Primary Ciliary Dyskinesia (PCD). The content on our website is NOT a substitute for the medical advice of your doctor or health care provider. We encourage ALL people with or suspected of having PCD to seek regular advice and monitoring from their doctor.

Techniques, drugs and dosages mentioned herein may not be appropriate for your medical condition. Please consult your doctor for personalised advice.

PCD Support UK makes NO representations or warranties with respect to any information or products described on this site and shall NOT be liable for any direct, indirect, consequential, special or other damages arising from the use of such information or products.

All postings on the PCD Support UK forums, including ‘HealthUnlocked’ and any other forums not mentioned here, reflect only the opinion of those posting the messages. PCD Support UK shall NOT be liable for any direct, indirect, consequential, special or other damages arising from the posting of such messages.

This is our main privacy policy. The terms of this policy may change, so please check it from time to time. This policy was last updated in April 2021.
If you have any queries about this policy please contact: Data Protection Compliance Officer, PCD Support UK at PO Box 2233, Buckingham, MK18 9DX

This policy is written in accordance with the General Data Protection Regulation (GDPR). We are registered with the Information Commissioner’s Office (ICO) as a data controller under number Z9310860.

The information we collect may include your name, date of birth, email address, postcode, and as a patient or clinician, your linked hospital. We will only request information regarding your linked hospital so that we can contact you about PCD-related research opportunities, developments, and events pertinent to the hospital you attend.

When it comes to any further personal information recognised by data protection law as sensitive, such as information about your health, we will only request this where there is a clear reason to do so, and we will always make these reasons clear to you.

We use your personal information to give you the information, services, or products you ask for. Here is an example of how we might use your information:

• To process a donation
• If you take part in a fundraising event
• To communicate with you
• To give information and advice
• To handle a complaint
• To provide a service
• To carry out an obligation or contract
• To process a grant application
• For internal administrative processes (such as our accounting and records)
• To let you know about changes to our services or policies
• To claim GiftAid on your donations
• To put you in touch with others (such as clinicians, researchers and patients), if you have previously expressed a wish for this to happen
• If you have indicated that you would like to sign up to our e-newsletter to receive regular information about the PCD Family Support Group’s services and activities, we will send you communications electronically. We send around 5 e-newsletters per year to keep you up to date with our activities and events, to inform you about the latest research and advice and to tell you about fundraising events and opportunities.

Please note that you can unsubscribe from our e-newsletter at any time simply by clicking the unsubscribe link at the bottom of the message, or by emailing [email protected]. You can also request this by writing to PCD Support UK, PO Box 2233, Buckingham, MK18 9DX.

When we collect and use your personal information, we will comply with the legal basis given in data protection law.

One of these is where we have obtained your specific consent. For example, this might be where we are required to ask for your consent to send you direct marketing by email, or to process special categories of sensitive data like health information.

You can choose not to receive these communications at any time by emailing [email protected] or by writing to us at: PCD Support UK, PO Box 2233, Buckingham, MK18 9DX.

Data protection law also sets out when we have a legal obligation to use or disclose information about you. For example, retaining and disclosing Gift Aid declarations under the Finance Act 2010 or recording records of sales, returns and complaints under the Consumer Rights Act 2015.

In some circumstances, we can also have a legitimate interest to process your personal data. We may process your personal information for our legitimate charity interests. For example, fraud prevention, direct marketing, modifying or improving our services or determining the effectiveness of promotional campaigns and advertising.

If you use your credit or debit card to donate to us using our secure online donation pages, you are going through our partner company JustGiving and the information you give, such as your credit card number and contact information, is provided so that the transaction can take place.

We will make sure this is done securely and in accordance with the Payment Card Industry Data Security Standard (PCI DSS). The payment will be processed by a third party and we will not store your card details.

Find out more about PCI DSS.

If we supply services or award grants to health care professionals, researchers or others in a business capacity:

• We use your personal information to give you the information, services, or products you ask for and to administer research grants.
• We use your information for internal administrative purposes (such as our accounting and records) and to let you know about changes to our services or policies.
• We will not send you communications about our work and how you can support our work (campaigns, volunteering and fundraising) unless you actively subscribe to our e-newsletter. You can sign up to our e-
• newsletter on our website or by emailing [email protected].

We will not sell or rent your details to any third parties, nor will we share it with any third parties without your consent.

When we collect your personal information, it is held in our e-newsletter program, Dotmailer, which uses strict password-protected access, procedures and security features to prevent unauthorised access.

We also take appropriate measures to make sure the information disclosed to us is:

• kept secure, accurate and up-to-date and
• kept only for as long as it’s needed for the purposes for which it was intended

Whilst we aim to protect your personal information, we cannot guarantee the security of any information you post, email or transmit by other means to us. You do so at your own risk.

We regularly review how long we hold your personal information. We are legally required to hold some types of information to fulfil our statutory obligations (for example the collection of Gift Aid). We will hold your personal information on our systems for as long as needed by the relevant activity. If you asked us not to contact you again, we remove your details from our mailing list and other relevant sources. You can always resubscribe later. Where your information is no longer required, we will dispose of it in a secure manner.

Personal information is information that can be used to identify you. You give us this when you:

• Ask about our activities
• Register with us for an event, campaign or in a professional capacity
• Send or receive an email
• Make a donation
• Ask a question about our services
• Use our services
• And provide information in other ways, such as, but not limited to, on social media.

We may also obtain personal information about you from family members, friends or organisations who contact us on your behalf.

We use Dotmailer for sending out our e-newsletters, Eventbrite for managing events and Justgiving.com for donations.  All three organisations have their own privacy policies, and we are not responsible for changes to external organisations’ privacy policies.

You have the following rights in relation to your personal information:

• to ask for a copy of the personal information we hold about you and for us to correct any inaccuracies.
• to request us to erase your personal information; to restrict our processing of your personal information, or to object to our processing of your personal information.

If you want to exercise these rights, please contact the Data Protection Officer at PCD Support UK, PO Box 2233, Buckingham, MK18 9DX.

We will respond within 30 days once we receive your written request and proof of identification.

You can get more information and advice about data protection or reporting a concern about data protection from:

Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
SK9 5AF

Helpline: 0303 123 1113
From outside the UK: +44 1625 545 745

ico.org.uk