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

Our contact details

Post

Foundation to Overcome Rare Genetic Errors, 5 Brayford Square, London, E10SG

Telephone

07838136180

Email

funding@weforgehope.org

What information we collect, use, and why

We collect or use the following information to provide services and goods.

• Names and contact details
• Addresses
• Date of birth
• Payment details (including card or bank information for transfers and direct debits)
• Health information (including dietary requirements, allergies and health conditions)
• Website user information (including user journeys and cookie tracking)
• Photographs or video recordings
• Call recordings
• Records of meetings and decisions
• Identification documents
• Information relating to compliments or complaints
• Information relating to sponsorship

We collect or use the following information for service updates or marketing purposes:

• Names and contact details
• Addresses
• Marketing preferences
• Location data
• Recorded images, such as photos or videos
• Call recordings
• IP addresses
• Website and app user journey information
• Information relating to sponsorship
• Records of consent, where appropriate

We collect or use the following information for research or archiving purposes:

• Names and contact details
• Addresses
• Location data
• Recorded images, such as photos or videos
• Call recordings
• IP addresses
• Website and app user journey information
• Personal information used for administration of research
• Personal information used for the purpose of research
• Records of consent, where appropriate

We also collect or use the following information for research or archiving purposes:

• Racial or ethnic origin
• Genetic information
• Health information

We collect or use the following information to comply with legal requirements:

• Identification documents
• Financial transaction information
• Criminal offence data (including Disclosure Barring Service (DBS), Access NI or Disclosure Scotland checks)
• Health and safety information

We collect or use the following information for recruitment purposes:

• Contact details (eg name, address, telephone number or personal email address)
• Date of birth
• National Insurance number
• Copies of passports or other photo ID
• Employment history (eg job application, employment references or secondary employment)
• Education history (eg qualifications)
• Right to work information
• Details of any criminal convictions (eg Disclosure Barring Service (DBS), Access NI or Disclosure Scotland checks)

Lawful bases

Our lawful bases for collecting or using personal information to provide services and goods are:

• Consent
• Contract
• Legal obligation
• Legitimate interest:

• • As a medical research charity, we seek to develop breakthroughs in mono-genetic auto-immune disease research, which has the potential to correct faulty genes or alleviate the symptoms of these diseases, leading to improved clinical outcomes.

Our lawful bases for collecting or using personal information for service updates or marketing purposes are:

• Consent
• Contract
• Legal obligation
• Legitimate interest:

• • Our mission as a charity is to raise awareness globally of rare genetic auto-immune disease. This will benefit those with these conditions, allowing them to become more knowledgeable, supported and empowered through their connection to us. It will allow us to connect with experts and researchers who can support our medical research aims and it will enable Foundation to Overcome Rare Genetic Errors to encourage support and donations from those individuals who share our aims and values.

Our lawful bases for collecting or using personal information for research or archiving purposes are:

• Consent
• Contract
• Legal obligation

Our lawful bases for collecting or using personal information for legal requirements are:

• Consent
• Contract
• Legal obligation

Our lawful bases for collecting or using personal information for recruitment purposes are:

• Consent
• Contract
• Legal obligation

Where we may get personal information from

• People directly
• Health care providers
• Legal and judicial sector organisations
• Schools, colleges, universities or other education organisations
• Publicly available sources
• Subscriptions from website, social media, newsletters hosted by the charity.

How long we keep information

• FORGE will not keep personal data for longer than we need it. We will regularly review personal data held to ensure that we can justify retention of it and/or to assess whether records can be anonymized.
• Day to day operation of FORGE data protection policy will be overseen by the appointed Data Protection Officer.  Standard retention periods for Data Groups will be set and reviewed at least annually by the Trustee Board and will take account of both the legal and operational requirements of the charity.
• Individuals have a right to erasure of their personal data, and FORGE will provide a clear process outlining for individuals the steps required to undertake this process if required.
• FORGE is legally allowed to retain personal data where it is kept for public interest archiving, scientific or historical research, or statistical purposes. Where this applies, the data will always be anonymized where possible and/or stored safely to comply with strict privacy regulations.

Who we share information with

Other organisations

• Organisations we’re legally obliged to share personal information with
• Publicly on our website, social media or other marketing and information media (where appropriate)

Sharing information outside the UK

Where necessary, we may transfer personal information outside of the UK. When doing so, we comply with the UK GDPR, making sure appropriate safeguards are in place. Please contact us for more information.

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 data.

Your right to rectification – You have the right to ask us to rectify personal data 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 data in certain circumstances.

Your right to restriction of processing – You have the right to ask us to restrict the processing of your personal data in certain circumstances.

Your right to object to processing – You have the right to object to the processing of your personal data in certain circumstances.

Your right to data portability – You have the right to ask that we transfer the personal data you gave us to another organisation, or to you, in certain circumstances.

Your right to withdraw consent – When we use consent as our lawful basis you have the right to withdraw your consent.

You don’t usually need to pay a fee to exercise your rights. If you make a request, we have one calendar month to respond to you.

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

How to complain

If you have any concerns about our use of your personal data, you can make a complaint to us using the contact details at the top of this privacy notice.

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:           

Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

Helpline number: 0303 123 1113

Website: https://www.ico.org.uk/make-a-complaint

Last updated

9 May 2024