Privacy Notice

The Ciliopathy Alliance (“the Charity”) is a registered charity in England and Wales (1148034); and a company limited by guarantee registered in England and Wales under number 7842342.

Our full contact details are set out below.

This Notice explains how we use your personal data: how it is collected, how it is held, and how it is processed. It also explains your rights under the law relating to your personal data.

Personal data is defined by the UK General Data Protection Regulation (UK GDPR), tailored by the Data Protection Act 2018 (the “GDPR”) as any information relating to an identified or identifiable natural person. In simple terms, this means any information that enables you to be identified.

Personal data covers obvious information such as your name and contact details, but it also covers less obvious information such as identification numbers, electronic location data, and information specific to your physical, physiological, genetic, mental, economic, cultural, or social identity.

Under the GDPR, you have the following rights, which we will always work to uphold:

• The right to be informed about our collection and use of your personal data. This Privacy Notice should tell you everything you need to know, but you can always contact us to find out more or to ask any questions.
• The right to access the personal data we hold about you.
• The right to have your personal data rectified if any of your personal data held by us is inaccurate or incomplete.
• The right to be forgotten, i.e. the right to ask us to delete or otherwise dispose of any of your personal data that we have.
• The right to restrict (i.e. prevent) the processing of your personal data.
• The right to object to us using your personal data for a particular purpose or purposes.
• The right to data portability. This means that you can ask us for a copy of your personal data held by us to re-use with another service or business in many cases.
• Rights relating to automated decision-making and profiling. Note that however we do not use your personal data in this way.
• For more information about our use of your personal data or exercising your rights as outlined above, please contact us using the details below.

You can obtain further information about your rights from the Information Commissioner’s Office or your local Citizens Advice Bureau.

If you have any cause for complaint about our use of your personal data, you have the right to lodge a complaint with the Information Commissioner’s Office. The Charity is registered with the Information Commissioner, Number Z9468678. The Charity is also a member of the Fundraising.

We may collect some or all of the following personal data (this will vary according to your relationship with us):

• Name
• Date of birth
• Gender
• Address
• Email address
• Telephone number
• Business name
• Job title
• Profession
• Payment information
• Employment details
• Information about your preferences and interests, such as fundraising or dietary needs for an event
• Online identifier (IP address)

The Charity does not collect special category or sensitive data as a matter of course. However, individuals may on occasion supply health-related information in relation to delivery of services by the Charity. For example, an individual needing befriending may share such information to enable the Charity to ‘match’ them to a volunteer; or an individual may share medical information that will help the Charity to liaise directly with a healthcare professional or similar on their behalf. The information is retained only as long as is necessary and is processed solely for this purpose.

There are several ways we may collect information about you. These include:

• When you provide it to us by getting in contact (phone/email/web form/via social media)
• When you subscribe to receive our newsletter (electronic or postal) or place an order with us
• When you register for and/or attend a Charity event

We do not record phone calls that you make to us. After we have answered your query, we will process any personal data in accordance with our privacy and retention policies, outlined below.

If you send us an email, we will process any personal data in accordance with our policies, and to respond to your message.

We sometimes use a form on our website to collect information. We delete the information after we have responded to any message and/or processed your personal data in accordance with our policies.

If you send us a message via social media, your message will be stored by the social media platform in accordance with its own privacy policy.  If the message contains your personal data, we will process this in accordance with our own policies.

We use a third party company, MailChimp, to collect your personal data for the purpose of sending you information and marketing communications by email. See below for more information about how your data is stored securely.

We use a third party company, Eventbrite, to collect your personal data when you register for an event with us. See below for more information about how your data is stored securely.

We may also collect information about you if you consent to the use of cookies when using our website. For example, we use Google Analytics to collect information from our website to help us analyse how many visitors use the site and what pages they read. This information does not directly identify you, the visitor, and we don’t allow Google to try to find out your identity.

Under the GDPR, we must always have a lawful basis for using personal data. This may be because the data is necessary for our performance of a contract with you, because you have consented to our use of your personal data, or because it is in our legitimate interests to use it. We will use your personal data for one of the following purposes:

• Internal record keeping.
• Maintaining a record of Gift Aid Declarations for HMRC.
• Providing our services to you.
• Personalising and improving services for you.
• Communicating with you. This may include responding to emails or calls from you.
• Supplying you with information by email and/or post that you have opted-in to (you may unsubscribe or opt-out at any time by contacting us using the details below or clicking Unsubscribe in relevant emails).
• Carrying out research and getting feedback.
• Statistics reporting.
• Evaluating website performance.

With your permission and/or where permitted by law, we may also use your personal data for marketing purposes, which may include contacting you by email and/or telephone and/or text message and/or post with information, news, and fundraising appeals.

We will not send you unlawful marketing or spam. We will always work to fully protect your rights and comply with our obligations under the GDPR and the Privacy and Electronic Communications (EC Directive) Regulations 2003, and you will always have the opportunity to opt-out.

We will not keep your personal data for any longer than is necessary in light of the reason(s) for which we first collected it. The table below shows how long we will keep your personal data. The retention period is determined by the type of data.

The Charity may hold information on individuals under 16 but only with the express permission of parents/guardians. We will review the retention period schedule every 3 years.

We will aim to store your personal data in the UK OR within the European Economic Area (the “EEA”). The EEA consists of all EU member states, plus Norway, Iceland, and Liechtenstein. This means that your personal data will be fully protected under the GDPR or to equivalent standards by law.

However, due to the global structure of the internet and use of cloud servers, we may store or transfer some or all of your personal data in countries that are not part of the European Economic Area (the “EEA” consists of all EU member states, plus Norway, Iceland, and Liechtenstein). These are known as “third countries” and may not have data protection laws that are as strong as those in the UK and/or the EEA. This means that we will take additional steps in order to ensure that your personal data is treated just as safely and securely as it would be within the UK and under the GDPR including:

• Obtaining copies of Data Protection and Data Processing Agreements
• Ensuring non-EEA organisations have Privacy Shield Certification

We use a third party company, Softforge, to manage and host our www.ciliopathyalliance.org website. The company has security in place to spot hacking attempts and any performance issues with the site. The web server is in the UK and they hold back-ups in Ireland.

The security of your personal data is essential to us. The Charity has taken appropriate technical and organisational measures to mitigate such risks as loss or unauthorised access, destruction, use, modification or disclosure of data.

Because the internet is not completely secure, any email you send to us is sent at your own risk. All incoming emails are automatically monitored for spam and blocked if considered unsafe. It is your responsibility to ensure that any email you send us is lawful and does not contain a virus.

We will not share any of your personal data with any third parties for any purposes, subject to one important exception.

In some limited circumstances, we may be legally required to share certain personal data, which might include yours, if we are involved in legal proceedings or complying with legal obligations, a court order, or the instructions of a government authority.

We do sometimes contract with the following third parties to supply services to you on our behalf. These may include payment processing, delivery, and marketing. In some cases, those third parties may require access to some or all of your personal data that we hold.

• PayPal
• Accountants

If any of your personal data is required by a third party, as described above, we will take steps to ensure that your personal data is handled safely, securely, and in accordance with your rights, our obligations, and the third party’s obligations under the law.

Some of those third parties are located outside of the European Economic Area. If any personal data is transferred to a third party outside of the EEA, we will take suitable steps in order to ensure that your personal data is treated just as safely and securely as it would be within the UK and under the GDPR, as explained above.

If you want to know what personal data we have about you, you can ask for details of that personal data and for a copy of it. This is known as a “subject access request”.

All subject access requests should be made in writing and sent to the email or postal addresses shown below. To make this as easy as possible for you, a Subject Access Request Form is available for you to use. You do not have to use this form, but it is the easiest way to tell us everything we need to know to respond to your request as quickly as possible.

There is not normally any charge for a subject access request. If your request is ‘manifestly unfounded or excessive’ (for example, if you make repetitive requests) a fee may be charged to cover our administrative costs in responding.

We will respond to your subject access request within not more than one month of receiving it. Normally, we aim to provide a complete response, including a copy of your personal data within that time. In some cases, however, particularly if your request is more complex, more time may be required up to a maximum of three months from the date we receive your request. We will keep you fully informed of our progress.

We may change this Privacy Notice from time to time. This may be necessary, for example, if the law changes.

This Privacy Notice was adopted on 7 August 2018

Registered office: Institute of Child Health, 30 Guilford Street, London WC1N 1EH

Data Protection Trustee: