The Privacy Policy outlines how the Ichthyosis Support Group (‘ISG’) will obtain, store and process any personal information gathered through interaction with our Website, This privacy policy applies to the Site and all products and services offered by the ISG. Please read the Privacy Policy carefully.


We promise:

  • To keep your data safe and private;
  • Not to sell your data; and
  • To give you ways to manage and review your marketing choices at any time


The ISG will be what’s known as the ‘Controller’ of the personal data you provide to us. To allow us to provide you with your chosen service, we may be required to collect sensitive data. However, we will not collect any data about you that we do not need in order to provide you with a suitable and appropriate investment service.


ISG collects personally identifiable information (such as name, address, telephone/fax number and e-mail address) only when provided by a visitor to our websites. ISG does not sell, rent or otherwise make available any personally identifiable information submitted by visitors to our website to any third parties.   This information will not be used for any direct marketing or unsolicited follow-up unless we have previously informed you of this possible use and you have given us your express permission when submitting it. ISG may use this information for such purposes as:

  • Sending you paper publications or other correspondence
  • Sending you e-mail press releases or notification

Only authorized ISG staff or our agents (who have agreed to keep information secure) have access to personally identifiable information.

The data that we collect from you may be transferred to, and stored at, a destination outside the European Economic Area ("EEA"). It may also be processed by staff operating outside the EEA who work for us or for one of our suppliers. By submitting your personal data, you agree to this transfer, storing or processing. ISG will take all steps reasonably necessary to ensure that your data is treated securely and in accordance with this privacy policy.

Unfortunately, the transmission of information via the internet is not completely secure. Although we will do our best to protect your personal data, we cannot guarantee the security of your data transmitted to our site; any transmission is at your own risk. Once we have received your information, we will use strict procedures and security features to try to prevent unauthorised access.

ISG does make use of non-personally-identifiable statistical information collected from users (browser type, geographical location, age, gender) for optimization of its sites as part of its continual internal review process and in a general way to learn more about its clients. This information will not be disclosed to third parties by ISG. This data will be used only for the stated purpose and will not be used for any unsolicited communication unless you give us permission.


The Act gives you the right to access information held about you. Yours rights can be exercised in accordance with the Act.  Any access request may be subject to a fee of £10 to meet our costs in providing you with details of the information we hold about you.


We use IP addresses to analyse trends, administer the site, track a user's movements and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information.


Cookies are small files which are sent by us to your computer or other access device. Cookies can help to improve your experience when you use the Website, and generally help us maintain and improve the Website for all users. On this Website we only use a temporary form of cookies (sometimes known as session cookies). These cookies are not permanently stored on your computer, and they are only used to collect basic information about your visit (e.g. which pages were visited, or what order the pages were viewed). We do not use cookies to retrieve any personal information about you.

You may choose to stop receiving cookies at any time through your web browser. If you want to delete any cookies that are already on your computer, please refer to the instructions for your file management software to locate the file or directory that stores cookies.  If you want to stop cookies being stored on your computer in future, please refer to your browser manufacturer’s instructions by clicking “Help” in your browser menu.  Further information on deleting or controlling cookies is available at


​The ISG has implemented accepted standards of security policies and controls that are aimed at protecting the personal data it has under its control from:

  • unauthorised access;
  • improper use or disclosure;
  • unauthorised modification; and
  • unlawful destruction or accidental loss.

ISG personnel are required to keep personal information confidential and only authorised persons have access to such information.


Children and young people under 16 are requested to get permission from their parent or guardian before they submit personal data to ISG wesbsite.


Links from this site may take you to other sites. Please be aware that we are not responsible for the privacy practices of such other sites. We advise you to check their privacy policies yourself before submitting any personally identifiable information.


Ichthyosis Support Group may utilise third party suppliers to facilitate digital broadcasts for information you have requested to receive, for example via an email newsletter subscription.  This may include, but is not limited to email broadcast where personally identifiable data may be shared for the purpose of fulfilling your communication request.  You may unsubscribe or update your subscription details via the links enclosed within any digital broadcast.


Unless subject to an exemption under the GDPR, you have the following rights with respect to your personal data: -

  • The right to request a copy of your personal data which the ISG holds about you;
  • The right to request that ISG corrects any personal data if it is found to be inaccurate or out of date;
  • The right to request your personal data is erased where it is no longer necessary for ISG to retain such data;
  • The right to withdraw your consent to the processing at any time;
  • The right to request that the ISG provide the data subject with his/her personal data and where possible, to transmit that data directly to another data controller, (known as the right to data portability);
  • The right, where there is a dispute in relation to the accuracy or processing of your personal data, to request a restriction is placed on further processing;
  • The right to object to the processing of personal data;
  • The right to lodge a complaint with the Information Commissioners Office.


By using this Website, you signify your acceptance of our Privacy Policy. If you do not agree to this Privacy Policy, please do not use our Website. We reserve the right, at our discretion, to change, modify, add, or remove portions from this policy at any time so visitors are encouraged to review this policy from time to time. We will of course notify you of any changes where we are required to do so. Your continued use of our Website following the posting of changes to these terms means you accept these changes.


This policy may be modified from time to time, and changes will be communicated promptly on this page.  Please contact us for more information on this policy.