Privacy Policy

This page, together with our terms of use and cookies policy, sets out how we use and protect your data. Arthrogryposis is registered with the Information Commissioner’s Office under number 1164158, is a registered charity under number 1164158.

You can change how we contact you at any time by emailing:

What data we collect and how we use it

The type and quantity of data we collect and use depends on why you have provided it.  We will only collect, use, and otherwise handle your personal data:

  • where you have consented to this for specified, explicit and legitimate purposes
  • where this is necessary to fulfil legal obligations that apply to us
  • where it is necessary for our legitimate interests relating to running our daily operations, as long as, in each case, these interests are in line with applicable law and your legal rights and freedoms.

You will always have the right to opt out of this. We may also conduct research using publicly available information to identify individuals who may have an affinity to our cause but with whom we are not already in touch.

This research helps us to understand more about you as an individual so we can focus the conversations we have with you about supporting Arthrogryposis and ensure that we provide you with an experience as a donor or potential donor which is appropriate for you.


If you support us, for example by signing up to an event, donating, signing up to Gift Aid, or signing up to a campaign, we will usually collect your name, contact details, and whether you would like to be contacted, and how we would do so. If appropriate, we may also ask to collect your date of birth, financial details, Gift Aid eligibility, reasons for support, information relating to health and disability, and responses to our campaigns.

We collect this data so we can keep you up to date with information and products you have requested, or may be interested in, and to ask for more support, in the way that you have chosen; to run our events; and to fulfil our legal responsibilities for financial and Gift Aid reporting. We will keep your data only for as long as necessary. If you have kindly donated to us, we are required to keep this data for 7 years. If you have not donated to us, we will only keep your data for 3 years.

Gift in Wills

Some of our supporters choose to let us know that they plan to leave a gift in their Will to Arthrogryposis to help us carry out our important work. We will collect contact details and contact preferences of supporters who ask us for more information about how to leave a gift to Arthrogryposis in their Will or who tell us that they are thinking about leaving a gift to the charity. We will use this data to keep in touch and send you other information and products that you are interested in. If you change your mind, then we will only keep this data for 3 years.

If you tell us that you do intend to leave us a gift in your Will then we will collect contact details and contact preferences. We will use this data to keep in touch and send you other information and products that you have expressed an interest in. This data will be kept on file long-term; hopefully, it will be many years before your gift is realised.


Some of our supporters kindly tell us stories about their experiences to help us in our campaigns. We will record the details of the story and contact details to enable us to get updated approval to use the story. We will keep this data for 3 years after you give it to us, and will contact you in line with the consent agreement you have made with us.


Our supporters, volunteers and customers kindly let us use photography and images of them to help our campaigns and activity come to life. We keep these images stored securely and will only use them with the subject’s permission.

Online Community

Arthrogryposis offers an online community for disabled people, parents, and carers to get disability advice and information, and to talk to people with similar experiences. Posts on the Community pages will be kept indefinitely.


Arthrogryposis offers a wide range of information and advice services to disabled people, families of disabled children, and businesses. We will collect your contact details and preferences, and any other data necessary for delivering the service. This information will be used for the purposes of the services. And will not be used to contact you about other services or offers from Arthrogryposis unless you have given us permission. 

We will keep the data for up to 6 years, in line with contracts and government regulations. 

If we become concerned about you or anyone else while using one of our services, we will act in line with safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.


Should you wish to register a complaint we will collect your name, contact details and details about the complaint to enable us to respond, monitor and improve our organisation. This data will be shared with any parts of Arthrogryposis or any third parties who are involved in resolving the complaint, for example, agencies that we have partnered with.

We will hold this data for 6 years.


When someone visits we use a third-party service, Google Analytics, to collect standard Internet log information and details of visitor behaviour patterns. We do this to find out information, such as the number of visitors to the various parts of the site.

We might also obtain your personal data through your use of Social Media such as Facebook, WhatsApp, TikTok, Twitter or LinkedIn, depending on your settings or the privacy policies of these Social Media and messaging services. To change your settings on these services, please refer to their privacy notices, which will tell you how to do this.


We use a third-party provider to deliver our e-newsletters. We collect statistics around email openings and clicks using industry-standard technologies including clear gifs to help us monitor and improve our e-newsletter. A list of our third-party providers can be made available upon request.

Suppression list

Should you not wish Arthrogryposis to contact you in the future, we will hold your contact details on file. This will enable us to ensure that we comply with your wishes.

We will hold this data indefinitely. Should you wish to engage with Arthrogryposis again then please get in touch:

Children’s data

Although children under 16 years of age can fundraise with the consent and support of a parent or guardian, we do not record their contact information. Instead, their parent or guardian’s details are recorded (with their contact preferences). Individuals over 16 years of age can be recorded but still require a guardian as a reference (for school contacts this can be a teacher).

For our services, the service is always provided to the family or parent/guardian. Data is supplied to us where we have a legal basis to collect and retain that data as per the contracts, or included in the case notes provided, for example by paediatricians or in independent support where there is a young person involved. This information is not shared with anyone not connected to providing the service.

Sharing your data

Unless we are required to share your data for legal or regulatory reasons, to help with a complaint, or to administer a Gift in Will, we will never share your data with other organisations unless you have given us consent to do so.

Keeping your data safe and up to date

At Arthrogryposis we ensure that appropriate technical controls are in place to keep your data safe.  Access to your data is regularly reviewed and will only be accessible to relevant, trained staff, volunteers, and contractors.

Where we use external companies to collect or process data on our behalf, we conduct comprehensive checks and put in place contracts to control how they manage the data they may collect or have access to. Your data will be hosted on servers located either in the UK or the EU, and your data will not be transferred out of the European Union [EU].

Your rights

We will only collect the data that we need to carry out the purposes you have contacted us for, or given us permission to use it for.

To enable us to carry out the purposes you have contacted us for there will be occasions when we will make some data collection mandatory. For example, your name and address to claim gift aid, or your email address to access our services. If you don’t provide this data, we cannot carry out the purposes you have contacted us for. We will always tell you why these fields are mandatory.

At any time that you wish you can:

  • gain access to your personal information
  • object to the processing of your personal information
  • object to the use of automated decision-making and profiling
  • restrict the processing of your personal information
  • ask for a copy of your personal data (known as data portability)
  • rectify or correct your personal information
  • have your personal information removed (known as Erasure or the ‘right to be forgotten’).
  • Where you have provided consent to be contacted or to receive a service, you will be entitled to withdraw that consent at any time.

If you are at any point unhappy with the way that we handled your personal data, you can make a complaint to the Information Commissioner’s Office.

To make changes to how we contact you, please contact us at:

Changes to this notice

We may make changes to this privacy notice from time to time. If we make any changes in the way we use your personal information, we will make this clear here on the Arthrogryposis website or by contacting you directly.

This privacy notice was last updated in June 2023.