Data Protection
Nephrotic Syndrome Trust - NeST
Privacy Policy (26/6/2024)
Our contact details.
Name: Wendy Cook, Director
Address: 38 Southway Drive, Yeovil, Somerset, BA21 3ED
Phone Number: 01935-706042
E-mail: wendy@nstrust.co.uk Website: www.nstrust.co.uk
The privacy and security of your personal information is very important. We want everyone who supports NeST is so many ways, or comes to us for support to feel confident that any personal information they share with us will be safe.
The type of personal information we collect from contacts.
We collect & process the following information during the charities work:
- Full name and title.
- Gender.
- Names of contacts/families/friends when involved in fundraising activities, events management, or research.
- Contact details including full postal address(s)
- Email addresses.
- Telephone numbers.
- Communication preferences.
- Your likeness, image, name, (and/or voice recordings with prior consent to our YouTube account).
- Names and contact details of organisations involved in the charities work regarding fundraising, events, and research.
- Medical conditions (with prior consent)
- Tax status (for using Gift Aid)
- Donations
- Details of how you interact with NeST e.g. fundraising request or requesting support.
- Employee data (NeST) and legal requirements.
- Social media platforms.
- Your stories & images in order to promote the work of NeST.
How we get the personal information and why we have it
Most of the personal information we process is provided to us directly by you for one of the following reasons:
- Taking part in Information days for those with Nephrotic Syndrome.
- Receiving newsletters & research updates.
- NeST campaigns and updates that may be of interest.
- You make a donation.
- Enquire about make a donation to NeST.
- Taking part in fundraising events.
- Sign up to receive news and updates.
- Advice on Nephrotic Syndrome related issues.
- Nest campaigns and updates that may be of interest.
Under the UK General Data Protection Regulation (UK GDPR), the lawful bases we rely on for processing this information are:
Your consent. You are able to remove your consent at any time. You can do this by contacting the charity.
What we do with the information we collect
We require this information for the following reasons:
- To process donations and claim Gift Aid.
- To respond to you if you have made an enquiry.
- To thank you for your donations, volunteering, or other support.
- To administer challenge and/or community events you undertake on our behalf.
- To keep you informed about the work and progress of the University of Bristol Research team and current research studies and and any academic publications of interest. NeST news such as our impact within the NeST community; fundraising campaigns and events both online via Zoom, or face to face meetings.
- To invite you to participate in surveys or research.
- To manage your communications preferences and consents.
- To better understand your relationship with NeST.
- For internal record keeping such as the management of feedback.
- We may analyse your personal information to create a profile of your interests and preferences so that we can contact you with information relevant to you.
- To administer our website and to troubleshoot, perform data analysis, research, and personalise the online communications which are presented to you.
- To allow for personalised communications to give relevant information to you and request how we as a charity can best support you.
- To prevent fraud, misuse of services or money laundering and perform due diligence where required.
- For financial management or auditing purposes
- To publicise your story and experiences of NeST. This will only happen after discussions with you, and with your consent.
Our legal basis for processing your information.
We process your data as described in this Privacy Statement because we have a legitimate need to do so to meet our charitable objectives. Some processing of data may be carried out to perform a contract with you, or it is required by law, such as the completion of due diligence, or obligations for processing Gift Aid on your donations.
Legitimate interests
In order to meet our charitable objectives, we need to undertake processing activities to enable us to deliver against our mission. We will only use your email information to contact you if we have your explicit consent to do so. In some cases, we may not yet have received consent from you to contact you, but feel that you may be interested in our communications (for example, if you have recently supported us in some way, perhaps by donating or signing up for a fundraising event). We may exercise our legitimate interest to contact you by post or telephone in these circumstances, but we will always carry out an assessment beforehand to ensure that the way we use your data is fair and does not exceed what you would reasonably expect to receive from us.
You always have opportunity to opt out of communication by any channel at any time, and we will always make it clear to you how to do this.
Specific consent
- Where you have provided your consent for us to process your data.
- You have the right to withdraw consent for any purpose at any time. Please see the ‘Your rights’ section later in this statement.
Security of Data
We are committed to ensuring that your information is secure. In order to prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect online.
Links to other websites
Our website may contain links to other websites of interest. However, once you have used these links to leave our site, you should note that we do not have any control over that external website. Therefore, we cannot be responsible for the protection and privacy of any information which you provide whilst visiting such sites and such sites are not governed by this privacy statement. You should exercise caution and look at the privacy statement applicable to the website in question.
Your rights
Keeping your records
We keep records for as long as required to operate the service in accordance with legal requirements, tax and accounting rules. Where your information is no longer required, we will destroy all paper records and archive all digital data.
We appreciate your support and aim to ensure that your privacy is treated with respect at all times, in compliance with the current Data Protection Laws.
Your data protection rights.
Under data protection law, you have rights including:
Your right of access - You have the right to ask us for copies of your personal information stored.
Your right to rectification - You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.
Your right to erasure - You have the right to ask us to erase your personal information in certain circumstances.
Your right to restriction of processing - You have the right to ask us to restrict the processing of your personal information in certain circumstances.
Your right to object to processing - You have the the right to object to the processing of your personal information in certain circumstances.
Your right to data portability - You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.
You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.
Please contact us at if you wish to make a request.
How to complain
If you have any concerns about our use of your personal information, you can make a complaint to: -
Wendy Cook,
38 Southway Drive, Yeovil, Somerset, BA21 3ED
It is not NeST’s policy to share personal information with any third parties other than where the law requires this. Any information is retained within the NeST charity and will never be sold, or shared with other organisations or individuals unless prior permission has been given. It is an expectation that those who engage with NeST in any way will also respect this primacy and people’s privacy.