Customer privacy notice

Registered name: Hereditary Fructose Intolerance (HFI) UK

We are the controller of your personal data. For more information on controllers and their responsibilities please see our guidance on data protection principles, definitions, and key terms.

This privacy notice tells you what to expect us to do with your personal information.

Contact details

What information we collect, use, and why

Lawful bases and data protection rights

Where we get personal information from

How long we keep information

Who we share information with

How to complain

Contact details:

Post:
67 Churchill Way
STAFFORD
ST17 9PB

Telephone: 07973 491339

Email:  help@hfisupport.org.uk

 

What information we collect, use, and why

We collect or use the following information to receive donations or funding and organise fundraising activities:

Names and contact details

Addresses

Tax payer information (for Gift Aid purposes)

We also collect or use the following special category information to receive donations or funding and organise fundraising activities. This information is subject to additional protection due to its sensitive nature:

Health information

We collect or use the following personal information for dealing with queries, complaints or claims:

Names and contact details

Correspondence

We also collect or use the following special category information for dealing with queries, complaints or claims. This information is subject to additional protection due to its sensitive nature:

Health information

Lawful bases and data protection rights

Under UK data protection law, we must have a “lawful basis” for collecting and using your personal information. There is a list of possible lawful bases in the UK GDPR. You can find out more about lawful bases on the ICO’s website.

Which lawful basis we rely on may affect your data protection rights which are set out in brief below. You can find out more about your data protection rights and the exemptions which may apply on the ICO’s website:

Your right of access - You have the right to ask us for copies of your personal information. You can request other information such as details about where we get personal information from and who we share personal information with. There are some exemptions which means you may not receive all the information you ask for. Read more about the right of access.

Your right to rectification - You have the right to ask us to correct or delete personal information you think is inaccurate or incomplete. Read more about the right to rectification.

Your right to erasure - You have the right to ask us to delete your personal information. Read more about the right to erasure.

Your right to restriction of processing - You have the right to ask us to limit how we can use your personal information. Read more about the right to restriction of processing.

Your right to object to processing - You have the right to object to the processing of your personal data. Read more about the right

Our lawful bases for the collection and use of your data

Our lawful bases for collecting or using personal information to receive donations or funding and organise fundraising activities are:

Legitimate interests – we’re collecting or using your information because it benefits you, our organisation or someone else, without causing an undue risk of harm to anyone. All of your data protection rights may apply, except the right to portability. Our legitimate interests are:

Because our charity is registered for Gift Aid and the donors name and address are required for this.

For more information on our use of legitimate interests as a lawful basis you can contact us using the contact details set out above

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. Read more about the right to data portability.

Your right to withdraw consent – When we use consent as our lawful basis you have the right to withdraw your consent at any time. Read more about the right to withdraw consent.

If you make a request, we must respond to you without undue delay and in any event within one month.

To make a data protection rights request, please contact us using the contact details at the top of this privacy notice.

Vital interests – collecting or using the information is needed when someone’s physical or mental health or wellbeing is at urgent or serious risk. This includes an urgent need for life sustaining food, water, clothing or shelter. All of your data protection rights may apply, except the right to object and the right to portability.

Our lawful bases for collecting or using personal information for dealing with queries, complaints or claims are:

Consent - we have permission from you after we gave you all the relevant information. All of your data protection rights may apply, except the right to object. To be clear, you do have the right to withdraw your consent at any time.

Legitimate interests – we’re collecting or using your information because it benefits you, our organisation or someone else, without causing an undue risk of harm to anyone. All of your data protection rights may apply, except the right to portability. Our legitimate interests are:

Our charity supports families where someone has a diagnosis for the rare metabolic condition HFI, or thinks they have the condition and are seeking a diagnosis. Our organisation is approached by individuals asking for advice and we keep the lines of communication open to allow us to fulfil the task asked of us. Someone seeking advice can contact us by phone, mail, email and WhatsApp. All contacts will have been instigated by the person asking the question or advice from us. Keeping the emails, messages allows us to contact the person again if we have further information for them.

For more information on our use of legitimate interests as a lawful basis you can contact us using the contact details set out above.

Vital interests – collecting or using the information is needed when someone’s physical or mental health or wellbeing is at urgent or serious risk. This includes an urgent need for life sustaining food, water, clothing or shelter. All of your data protection rights may apply, except the right to object and the right to portability.

Where we get personal information from

Directly from you
Family members or carers

How long we keep information

Health Information
For as long as the HFI health needs of the individual are still ongoing or they choose to be engaging with the charity.

Gift Aid related detail
For 6 years from the end of the financial year in which the details were submitted on annual accounting.

Who we share information with

Others we share personal information with:

Charities and voluntary organisations  such as Metabolic Support if it is felt that another organisation is better placed to offer advice

Publicly on our website, social media or other marketing and information media

How to complain:

If you have any concerns about our use of your personal information, you can make a data protection complaint to us:

Email: carol@hfisupport.org.uk

Telephone: 07973 491339

Post: 67 Churchill Way Stafford ST17 9PB

If you remain unhappy with how we’ve used your data after raising a complaint with us, you can also complain to the ICO.

The ICO’s address:

ICO Head Office
4th Floor, No.3 Circle Square 5 Hawkshaw Street Manchester
M1 7BL

Helpline number: 0303 123 1113
Website: https://www.ico.org.uk/make-a-complaint