Privacy policy

This policy sets out how The Information Point for Centronuclear and Myotubular Myopathy uses and protects personal information. Please note this policy is subject to change and you should check this page before using the website to ensure you are happy with any changes. Please also see the Terms of Use page. If you have any questions about either the Privacy Policy or the Terms of Use, email

Information collection

In general, you can use this website without providing information. However, information may be obtained about you if you make contact, request to be added to the Information Point mailing list, or by the automatic collection of information about you as you use the website. Information collected may include your name and contact information, including your address and email address.

What is done with the information collected

Information is used to provide a better service and in particular for the following reasons:

  • internal record keeping
  • to send newsletters and information about research, fundraising and current projects
  • to respond to enquiries
  • to contact you for market research purposes.

Unless you have asked not to be contacted you may be contacted for any of the above reasons. You can however ask to be removed from The Information Point mailing list at any time.

Who will the information be shared with

Personal information will not be transferred, disclosed, sold, distributed or leased to third parties without permission or required by law. Information may be shared with other third parties in order to put people in touch with each other, but this will only be done if specifically asked to do so by both parties.


Links appear on this website to others and once you have left The Information Point website, you should exercise caution and look at the privacy statement applicable to the website in question. No responsibility can be taken for content on other websites or for the protection and privacy of any information which you provide to them.


Although this website does not currently use cookies, this may change. Cookies are files that store information on your hard drive or browser that means that a website can recognise that you have visited before. They make it easier for you to maintain your preferences on the website, and by seeing how you use the website, a website can be tailored around your preferences and measure usability of the website.

You can, should you choose, disable the cookies from your browser and delete all cookies currently stored on your computer. You can find out how to do this for your particular browser by clicking ‘help’ on your browser’s menu or by visiting the All About Cookies website.