Data Protection

Data Protection

In May 2018, the GDPR became law. Individuals can now take full control of their personal information. With enhanced rights and an emphasis on fairness, transparency, accuracy and security, the GDPR effectively prevents the unauthorised processing of personal information. NeST fully supports and endorses this regulation.

Data Protection

The old Data Protection Act 1998 was a principle-based legal structure and the GDPR continues that approach. This means that rather than a set of rigid rules the law gives broad principles that will be applied differently by different organisations depending on their circumstances. 

The six data protection principles contained in the GDPR:

Lawfulness, fairness and transparency
Purpose limitations
Data minimisation
Storage limitations
Integrity and confidentiality
The privacy and security of your personal information is very important we understand and 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.

This privacy policy explains how data is used, or not and a little about GDPR. In the case of NeST as a very small charity and in the way it functions and works by choice, data has never been stored, archived, or passed on other than as stated below. NeST has never had a database of membership, but is rather a loose community of people who seek to find a cure, new therapies and support each other in our journey with Nephrotic Syndrome.

So there is no newsletter, and no email communications, or telephone conversations unless instigated by you and no information will ever be passed onto third parties unless this is agreed with you. Young people and children under the age of 18 years will require the consent of a parent, or guardian including their use of social media and NeST to take part in events and discussions.

The only temporary exceptions to this policy being with fundraising events or patient days or similar - where communications are made as part of this by organisers, or where individuals have made contact for advice and support to NeST. No central database is kept or records retained. Gift Aid details are kept where appropriate to comply only with HMRC regulations. And so NeST works in a very different way to most other charities and especially larger charities.

No record containing personal details is kept of those who form part of the NeST community and this includes health details. Social media is part of the NeST community, but although it is monitored for any comments or behaviour that would be offensive or deemed misleading – it’s an open forum for those who have NS, their families and friends. From time to time individuals from other countries also join in our discussions. It is up to an individual to choose any privacy settings they feel appropriate.  Please read our NeST social media policy on the website for further details.


In the event of a breach of security leading to the accidental or unlawful destruction, loss, alteration, unauthorised disclosure of, or access to, personal data, the Charity shall promptly assess the risk to people’s rights and freedoms.

GDPR means the General Data Protection Regulation. Responsible person ~ Wendy Cook, Director of NeST

Keeping your information safe

Up to date cyber security software is used to help prevent any breech of information.

If you make a donation online or purchase a product from us, your card information is not held by us, it is collected by our third party payment processors, who specialise in the secure online capture and processing of credit/debit card transactions. Access to personal data shall be limited to personnel who need access and appropriate security should be in place to avoid unauthorised sharing of information.

When personal data is deleted this should be done safely such that the data is irrecoverable

Website and Cookies

A cookie is a small file which asks permission to be placed on your computer's hard drive. Once you agree, the file is added and the cookie helps analyse web traffic or identify you when you visit a particular site. Cookies allow web applications to respond to you as an individual. The web application can tailor its operations to your needs, likes and dislikes by gathering and remembering information about your preferences.

Overall, cookies help us provide you with a better website by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us.

You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer.

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