Privacy and Data Protection Policy
The Ciliopathy Alliance ("CA")
Registered in England and Wales, Company Ltd by Guarantee
The CA respects the privacy of everyone who visits this site. The purpose of this policy is to describe the types of information that we collect from you when you visit our site and explain how we use this information.
Any information that you choose to provide us with about yourself will be held on a secure computer in strict accordance with the Principles of the Data Protection Act (DPA) 1998 (UK) and relevant European Union Data Protection Directives.
The CA may change this policy at any time in line with legislative changes or changes to the policy of the organisation. Please check our website from time to time to ensure you are aware of any changes.
Your personal information
We collect your personal information when you complete an enquiry form or send an email. This information will include your name and email address plus other relevant information you choose to provide. The more information you can give us about yourself, the better we can provide you with the services that you need and want. We publish information leaflets and a newsletter for our members, health professionals and those that view the CA website and these may contain from time to time images and personal information of our member families. We never publish any image of or anything without clear consent from those concerned. We also hold personal information about our staff, trustees and volunteers.
However, we only collect this information from you if you choose to provide it to us and we do not hold your information for longer than is necessary.
We use this information:
- To help us respond to enquiries
- To help us make the website more relevant to visitors’ needs
- To conduct research (anonymous)
- To email visitors from time to time with information or services which we think may be of interest
We will not disclose any personally identifiable information without your permission unless we are legally entitled or required to do so (for example, if required to do so by legal process or for the purposes of prevention of fraud or other crime). You will be treated as having given your permission for disclosures referred to in this policy.
Who has access to your information?
Only designated, authorised people have access to your personal information, for instance staff or trustees. If you have allowed us to use your personal information for the purposes above, we may have to disclose this information to any company or organisation to which we pass the responsibility to handle email or other direct marketing communications. Should this happen, we ensure that any third party companies who handle your information are registered with and comply with the Data Protection Act.
Can you access the information we hold about you?
- Your personal data which is stored with us
- The purposes for which your data is being processed
- Who has access to your data
Due to the global structure of the internet, there is a possibility that information provided by you may be transmitted or processed internationally. As specified by the DPA, we undertake to stop the transfer of personal data to any country or territory outside the European Economic Area (EEA) unless the third country in question ensures an adequate level of protection for the rights and freedoms of data subjects.
Non-personal information collected during your visit to our site
Whenever you browse our website, read pages, or download information, the web server automatically records certain information about your visit from the computer or device you use to access our site.
This information does not identify you personally. It just tells us how many visitors come to our site and the types of computers they use. With this information, we can improve our site for all our visitors and make it more useful to you.
The information includes the following:
- The date and time you access our site.
- How many and which pages you visit during a 'session' on our site and how long you were on the site.
- Your internet domain name (this might be your internet service provider such as BT, Yahoo or your school, place of work etc) and the ‘IP’ address (this is a number assigned to your computer whenever you are surfing the web) which allows you to access our website.
- The internet browser you use (eg Microsoft Explorer, Firefox, Chrome or Safari) and your computer’s operating system (eg Windows Vista or Mac).
- The site you were on before you linked to ours (eg Google if you found us from a search engine).
A cookie is just a line of text and numbers that is created by our website and stored on your computer or other device.when you visit our site. The cookie does not collect or contain personal information about you and poses no security or virus risk to your computer. When you return to our site, the cookie associates your computer with the information that you gave us when you first visited or registered.
We personally read all emails sent to us and we undertake to respond with 48 hours of receipt.
Your email address is kept securely and is only used to answer your request.
We have implemented technology and policies with the objective of protecting your privacy from unauthorised access and improper use and will update these measures as new technology becomes available.
Third party websites
We cannot be responsible for the privacy policies and practices of other websites, even if you access them using links from our web site, and recommend that you check the policy of each site you visit. In addition, if you linked to our web site from a third party web site, we cannot be responsible for the privacy policies and practices of the owners or operators of that third party web site and recommend that you check the policy of that third party web site and contact its owner or operator if you have any concerns or questions.
Message board and forums
Where we operate a message board or forum, you will be invited to submit a new message or to reply to an existing message. Such messages, contacts and any other information you provide to us are together referred to in these terms and conditions as "Information". By submitting Information you are granting permission for us to use, edit, modify, copy, distribute, transmit, publicly display, publicly perform, reproduce, publish or transfer any such Information and to allow others to do the same.
We reserve the right to:
* remove or to edit any Information or materials or block your access at our sole discretion and without notice; and/or
* disclose any information as required by law; and/or
* take such other action as may be reasonably necessary to prevent any breach of these terms and conditions or any breach of applicable law or regulation.
More questions about privacy?
Please contact us if you have any questions or concerns about how we protect your personal information and ensure your privacy.
Write to: The Ciliopathy Alliance, 91 Royal College St, London NW1 0SE
Phone: +44 (0) 20 7387 0543