Privacy and Data Policy

The Board of Cystic Fibrosis Association of New Zealand (CFNZ) is committed to protecting the privacy of personal information which the organisation collects, holds and administers. Personal information is information which directly or indirectly identifies a person.

Purpose

The privacy policy (“policy”) applies for all personal information and data collected by Cystic Fibrosis Association of NZ (CFNZ) “we” or “us”). This privacy notice explains how CFNZ collects, stores, uses and shares personal information, whether or not it is collected via this website.

By accessing and using CFNZ applications such as (“Digital Village”), and any applications relating to this application (“sites”), this policy applies.

Policy

Cystic Fibrosis NZ (CFNZ) collects and administers a range of personal information for the purposes of employment/volunteering/governance/support/advocacy/care/ education/statistical purposes and donor experiences.  The organisation is committed to protecting the privacy of personal information it collects, holds and administers.

This policy may be amended from time to time.

This policy applies to all who interact with us.

Cystic Fibrosis NZ (CFNZ) is bound by laws which impose specific obligations when it comes to handling information. The organisation has adopted the following procedures contained as minimum standards in relation to handling personal information.

Responsibilities 

Cystic Fibrosis NZ (CFNZ)’s Board is responsible for developing, adopting and reviewing this policy.

Cystic Fibrosis NZ (CFNZ)’s CEO is responsible for the implementation of this policy, for monitoring changes in Privacy legislation, and for advising on the need to review or revise this policy as and when the need arises.

Processes

Information Collection

We do not collect personal information on CFNZ sites, the Digital Village site or related sites unless you choose to give it to us.  If you provide personal information through this site, it will be held securely by CFNZ as required by the Privacy Act 2020 and Health Information Privacy Code 2020.

• We collect your information from you, including when you provide the requested information or access the sites. This information is primarily collected from you directly when you access our products/services or submit information as part of an interaction or transaction.

• Information we collect may include (but is not limited to):
  • Personal Information: Name, email address, postal address, phone number, and payment details.
  • User-Generated Content: Campaign descriptions, images, videos, and other content you share.
  • Purchase information.
  • Consumer behaviour.

Use and Disclosure

We will only use personal information that you provide to us through this site for the purposes for which you supplied it or authorise it, provide services to you and other users, for safety and security reasons, and in situations permitted under the Privacy Act 2020.

• We may use and disclose your personal information:
  • to complete our transactions with you and/or carry out your requested services;
  • to communicate with and market to you about your support, campaigns, or services;
  • to display and promote fundraising campaigns;
  • to manage and enhance our products and services;
  • to monitor and analyse information about our commercial performance and any aspects of our business;
  • to customise/personalise any marketing or other communications with you;
  • undertake research or statistical analysis (on an anonymised basis);
  • use within our own internal business purposes including record keeping, reporting and improving/enhancing our services, activities and systems.
  • to comply with our legal obligations.

 Storage and Sharing of Your Information

• We will take reasonable steps to protect the security of your personal information against loss or unauthorised access, modification, corruption or disclosure.
• Information may be held at our physical premises and may also be stored by data storage services/providers (which may include digital data storage such as cloud based systems).
• Trusted third-party service providers(e.g., payment processors, email platforms) who are contractually bound to protect your data.
• Legal authorities, if required by law or to protect the safety and rights of individuals or the public.
• If we no longer need your personal information for the permitted purposes, we will take reasonable steps to destroy it.

We do not give, sell, exchange or rent your personal information.

Data Security

Protecting the privacy and personal data of the visitors to CFNZ sites is of the utmost importance to us.

We take reasonable steps to protect your data from unauthorised access, alteration, or loss.  However, no method of transmission over the internet is 100% secure, and we cannot guarantee absolute security.

We do not share information with any third parties except for our service providers with whom we have agreements that protect the information from any unauthorised use or in compliance with the law.

Data Retention

Personal information is retained only as long as necessary for the purposes outlined or as required by law.

Campaign-related content may be retained indefinitely for archival and promotional purposes.

Access and your Rights

You can seek access to your personal information by contacting us using the contact details specified below.  We are entitled to request proof of identity and require you to specify what information you require before allowing such access.

You may ask to check your information to verify that it is correct, complete and up to date.

If you request us to correct any of your information we will do so.  We may also inform anyone else who we know has received the information from us to correct their records.

Cookies

Some pages on the sites may use cookies.  These are information files that can identify the computer you are working from and gives us details of your IP address, PC platform, browser and domain, and may be used for site registration, and personalisation.  You can choose to refuse cookies by turning them off in your browser and/or deleting them from your hard drive, although please be aware doing so may affect the functionality of this website for you.

Third Party Sites

The sites may provide links to other websites.  If you follow a link to any of those websites, please note that they have their own privacy policies and that we do not accept any liability for those policies and websites.  You should review the policies of those websites before using and providing any information to those websites.

Changes to our Privacy Policy

We may update this privacy notice from time to time, for example, to reflect changes to the Privacy Act.

This notice was last updated 5 May 2026.

Contact Us

If you have any questions about this policy or related issues, please contact us by using the contact details shown on the contact page on our website here>