Our Privacy Policy – Primary Ciliary Dyskinesia Family Support Group

May 2018

 

PCD Family Support Group is the only UK charity providing an up-to-date information service about the genetic lung condition Primary Ciliary Dyskinesia, how it is diagnosed and how to manage it. We are committed to raising awareness of and promoting research into PCD, both among the clinical community and in general. Your engagement as supporters and volunteers is vital to achieving all these things.

We are committed to protecting your personal information. We’re also committed to being transparent about what information we hold, and for what purpose.

 

Disclaimer

The information and advice found at the P.C.D. Family Support Group is NOT a substitute for the medical advice of your doctor who has specific knowledge of your medical condition. Visitors to this site should regularly consult doctors in all matters relating to their personal health.

Drugs and dosages mentioned herein may not be appropriate for your medical condition. Please consult your doctor.

The P.C.D. Family Support Group 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 P.C.D. Family Support Group Discussion Board reflect only the opinion of those posting the messages and the P.C.D. Family Support Group shall NOT be liable for any direct, indirect, consequential, special or other damages arising from the posting of such messages.

 

 

This Privacy Policy explains:

 

This is our main privacy policy. The terms of this policy may change, so please check it from time to time. We updated it in May 2018.

If you have any queries about this policy please contact: Data Protection Compliance Officer, PCD Family Support Group at 15 Shuttleworth Grove, Wavendon Gate, Milton Keynes MK7 7RX.

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

 

How do we collect personal information?

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, or provide information in other ways.

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 enewsletters ,Eventbrite for managing events and Justgiving,com for donations.  All three  organisations have their own privacy policies:

https://www.dotmailer.com/media/2199813/dotmailer-platform-gdpr-faqs.pdf

https://www.eventbrite.co.uk/support/articles/en_US/Troubleshooting/eventbrite-privacy-policy?lg=en_GB

https://www.justgiving.com/info/privacy-policy-versions/privacy-policy-v20

 

What information do we collect?

The information we collect may include your name, year of birth, email address, postcode, and as a patient or clinician, your linked hospital. We’ll 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’ll only request this where there is a clear reason to do so and we’ll always make these reasons clear to you.

The PCD Family Support Group’s website, like many websites, uses cookies in order to provide a more personalized web service. Cookies are small text files stored by your browser on your computer or phone and they are used to make websites easier for visitors to use. They allow sites to gather information such as most visited web pages and which services, events or facilities are most popular in order to improve the visitor’s experience. We may also track which pages users visit when they click on links in our emails. Please note that no advertising cookies are used on this site and no cookie data is used for marketing purposes. You can refuse cookies but you may not be able to use all the interactive features of our website. Please see our full cookies policy at http://www.pcdsupport.org.uk/index.php/cookies/.

 

Debit and credit card information

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.

 

How do we use your information?

We use your personal information to give you the information, services, or products you ask for.  This could be to:

  • process a donation
  • take part in a fundraising event
  • communicate with you
  • give information and advice
  • handle a complaint
  • provide a service
  • carry out an obligation or contract
  • process a grant application

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 no more than 5 e-newsletters per year to keep you up-to-date with our PCD family activities and events (including PCD Days), 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 enewsletter at any time simply by clicking the unsubscribe link at the foot of our enewsletters or by emailing admin@pcdsupport.org.uk, or writing to PCD Family Support Group at 15 Shuttleworth Grove, Wavendon Gate, Milton Keynes MK7 7RX.

 

For more detail, please see how we might use your information if you are:

 

How do we use your information
  • We use your personal information to give you the information, services, or products you ask for.
  • 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 admin@pcdsupport.org.uk , or writing to PCD Family Support Group at 15 Shuttleworth Grove, Wavendon Gate, Milton Keynes MK7 7RX.
  • We use your personal information to claim Gift Aid on your donations.
Legal basis

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 admin@pcdsupport.org.uk, or writing to PCD Family Support Group at 15 Shuttleworth Grove, Wavendon Gate, Milton Keynes MK7 7RX

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.

 

If you use our services, including contacting our helpline, attending an event or email us for information:

  • We use your personal information to give you the information, services, or products you ask for.
  • 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 admin@pcdsupport.org.uk , or writing to PCD Family Support Group at 15 Shuttleworth Grove, Wavendon Gate, Milton Keynes MK7 7RX.
Legal basis

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 SMS, or to process special categories of sensitive data like health information.

You can choose not to receive these communications at any time by emailing admin@pcdsupport.org.uk or writing to PCD Family Support Group at 15 Shuttleworth Grove, Wavendon Gate, Milton Keynes MK7 7RX

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.

 

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 admin@pcdsupport.org.uk , or writing to PCD Family Support Group at 15 Shuttleworth Grove, Wavendon Gate, Milton Keynes MK7 7RX.

 

Legal basis

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 admin@pcdsupport.org.uk or writing to PCD Family Support Group at 15 Shuttleworth Grove, Wavendon Gate, Milton Keynes MK7 7RX

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.

 

Who do we share your information with?

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

 

How do we protect your information?

When we collect your personal information it is held in our enewsletter 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

But while 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.

 

How long do we keep your information?

We regularly review how long we hold 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 would hold a record of that indefinitely. You can let us know via our website or Facebook pages if you wish to go back on our database at a later date. Where your information is no longer required we will dispose of it in a secure manner.

 

Your rights

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 15 Shuttleworth Grove, Wavendon Gate, Milton Keynes MK7 7RX.

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

 

The data protection regulator

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

 

Primary Ciliary Dyskinesia Family Support Group, May 2018