At The Julian Benson Cystic Fibrosis Foundation, we rely on the generosity and support of individuals like you. That is why we want to be completely transparent about why we need the personal information we request when you support us and how we will use it.
We are totally committed to protecting your information and using it responsibly. Please read our policy
carefully to understand how we collect, use and store your information.
The processing of your information is carried out by or on behalf of Julian Benson CF Foundation.
Julian Benson CF Foundation is a registered charity in Ireland (CHY 22298)
by writing to us at:
Julian Benson CF Foundation, 26 Pembroke Street Upper, Dublin 2
WHY WE USE YOUR INFORMATION
We will only use your information where we have a legal basis to do so and will always respect your
Where we use your information, it may be because you have consented to us doing so or because we
consider we have a legitimate interest to do so. Where we do rely on a legitimate interest to use your
information, we will always ensure that this is done in a way so as not to be intrusive or cause distress, and that respects your rights.
WHAT INFORMATION WE COLLECT
We process your personal information to meet our legal, statutory and contractual obligations and to
provide you with our products and services. We will never collect any unnecessary personal data from you
and do not process your information in any way, other than as specified in this notice.
The personal data that we collect from is –
• Home address
• Personal email
• Business email
• Home telephone number
• Mobile telephone number
WE COLLECT INFORMATION IN THE BELOW WAYS: –
Online forms, website orders, employment CVs, hospital referrals (with separate consent), patient
feedback (with separate consent).
HOW WE USE YOUR INFORMATION
To respond to or fulfil any requests, complaints or queries you make to us if you contact us directly, we
will use the information you give to us to handle your enquiry or request. This may include responding to
your query or feedback. We may also keep a record of conversations we have with you, feedback you
provide and any marketing materials we send out to you. This can help us to handle queries more
To process any donations you make, claim any relevant Gift Aid and maintain a record of your past or
potential future financial contributions
This includes keeping a record of any pledges, gift agreements or any other indications that you are
planning to donate to Julian Benson CF Foundation. We keep a record of any donations we receive for
audit purposes, and as we are legally required to do so. We may need to use your information to prevent
To provide you with information and support for any events, fundraising and campaigning activities or
volunteering opportunities you sign up to
If you have completed a form to register or enquire about an event or activity, or to sign up to one of our
campaigns, we will consider this as a request to send you details about the event, activity or campaign.
WHAT WE DO IF YOU CHOOSE TO TELL US ABOUT YOUR
EXPERIENCE OF CYSTIC FIBROSIS
Where you have provided information about your experience of cystic fibrosis, including through a survey, focus group, questionnaire, or when we are talking to you by phone or email, we will explain what the information will be used for and whether it will be held anonymously or not. If the information will be held in a way that could be connected to you personally, we will ask your permission to store and use what you tell us.
We will use this information for the purposes explained to you at the time of collection.
SHARING YOUR INFORMATION WITH OTHER ORGANISATIONSWe will never share your information with third parties for their own purposes.
We also use suppliers known as ‘data processors’ to process data on our behalf, for example, to send out
mailings. When enlisting the services of such suppliers we ensure that they are under a contractual
obligation to only use your information in accordance with our instructions and for no other purposes.
TRANSFERS OUTSIDE THE EU (IF APPLICABLE)The General Data Protection Regulation (GDPR) protects personal data in the European Union but some
other countries may not necessarily have the same high standard of protection for your personal data.
JBCFF does not transfer or store any personal data outside the EU.
HOW LONG WE KEEP YOUR INFORMATION
As a rule, we will hold your information for a period of up to seven years from the end of your relationship with the charity in accordance with our data retention policy. In some circumstances, this will be shorter.
For example, information related to unsuccessful job applications is destroyed after two years.
Under the General Data Protection Regulations (GDPR), you have the following rights:
• Information Right – the right to receive the information contained in this policy and our data collection
forms about the way we process your personal data.
• Personal Data Access Right – the right to know that we are processing your personal data and, in most
circumstances, to have a copy of the personal data of yours that we hold. You can also ask other details
such as what purpose we process your data for and how long we hold it.
• Personal Data Correction Right – You have the right to request that we correct inaccurate data or complete incomplete data that we hold on you.
• Personal Data Erasure Right – Known as the Right to be forgotten. In certain circumstances, you may
request that we erase your personal data held by us.
• Personal Data Restriction Right – You have the right to restrict the way we process your personal data in certain circumstances, for example if: you contest the accuracy of the data, if our processing is unlawful, to pursue legal claims, where we are relying on legitimate interests to process data
• Data Processing Objection Right – You have the right to object to us processing your data for (I) direct
marketing purposes (ii) scientific or historical research or statistical purposes and (iii) purposes of profiling related to direct marketing or based on our legitimate interests or on the performance of a task in the public interest
• Data Portability Right – you have the right to receive a copy of certain personal data or to have it
transferred to another organization in some circumstances
If we receive a request from you to exercise any of the above rights, we may ask you to verify your
identity before acting on the request, this is to ensure that your data is protected and kept secure.
RIGHT TO WITHDRAW CONSENT AT ANY TIME
Where we use your personal information based on your prior consent, such information about your health,
or where you have given us permission to send you marketing communications by email, mobile
messaging and by direct message on social media, you can withdraw your consent at any time by
Julian Benson CF Foundation takes your privacy seriously and takes every reasonable measure and
precaution to protect and secure your personal data. We work hard to protect you and your information
from unauthorised access, alteration, disclosure or destruction and have several layers of security measures
in place, including –
SSL, TLS, encryptions, pseudonymisation, restricted access, IT authentication, firewalls, anti-
A ‘cookie’ is a small piece of data sent from a website and stored on the user’s computer by the user’s web
downloaded onto your computer/mobile device so that the next time you visit that site, your device will
remember useful information such as items added in the shopping cart, visited pages or logging in options.
Cookies are widely used in order to make websites work, or to work more efficiently, and our site relies on
cookies to optimize user experience and for features and services to function properly.
Most web browsers allow some control to restrict or block cookies through the browser settings, however
if you disable cookies you may find this affects your ability to use certain parts of our website or services.
For more information about cookies visit https://www.aboutcookies.org.
If you have any complaints about how we handle your personal data, please contact us at Julian Benson CF
Foundation, 26 Pembroke Street Upper, Dublin 2 or on firstname.lastname@example.org so we can resolve the issue, where
HOW WE KEEP YOUR INFORMATION SECURE
We take such measures as are appropriate to ensure the confidentiality, integrity and availability of
systems, which are regularly independently tested and reviewed.
We may update this policy to reflect changes in how we use your information. You may wish to check this
policy each time you provide Julian Benson CF Foundation with your information. Where appropriate, we
will provide you with notice of any significant changes to how we use your information.
WE KEEP YOUR PERSONAL INFORMATION PRIVATE
AND SAFE – WE DO NOT SELL, RENT OR SHARE
Should you wish to retrieve or delete the personal data that we store on our website database please email