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Supporting people affected by Charcot-Marie-Tooth disease.

Privacy Policy

This privacy policy sets out how Charcot-Marie-Tooth UK uses and protects any information that you give us when you use this website.

We are committed to ensuring that your privacy is protected.  Any information that we ask you to provide will only be used in accordance with this privacy statement.

When you contact CMT UK’s Information and Support Service, your contact information (if you choose to share them with us) and brief details of your enquiry are stored carefully and held securely on our database.  We use this information to assist you with our enquiry.

When you complete the online joining form, all your information is stored using a database to allow us to manage and administer our membership scheme.  At this point, we will add your contact details to our “E-ComMent” electronic newsletter system, from which you can unsubscribe at any point. The information on our database updated and added to, should you choose to become a paying member of the organisation.

As a paying member, we hold your personal details for as long as you continue to pay your annual subscription.  If you choose not to pay your membership subscription, either on receipt of your initial membership pack, or your annual subscription, we keep your data on our database for a maximum of two years, then all information is deleted from our records, unless you have a Gift Aid declaration, in which case, we must keep your data for six years (as per HMRC rules).   We guard your personal data carefully and will only share it with authorised representatives of the organisation, if you consent for us to do so.

You can cancel your membership and/or unsubscribe from receiving any future communications at any time. Charcot-Marie-Tooth UK subscribes fully to the Data Protection Act (1998) and the E-communications Act (2003). Charcot-Marie-Tooth UK will never intentionally misuse or allow others to misuse any personal data it collects or holds.

Charcot-Marie-Tooth UK will not use any personal data collected on this site for any purpose other than that specifically stated – in other words, the administration of the membership schem

Charcot-Marie-Tooth UK does not sell or pass on personal contact details to any organisation for commercial purposes and will never do so in the future.

Donations and Direct Debits

When you make a payment through this website, whether it be for your subscription, a purchase from our online shop, or a donation, we use PayPal to securely process your card details.  These card details are not available to any member of staff and are not stored on any system.  We meet the requirements of the Payment Card Industry Data Security Standard (PCI DSS).  If you phone us or send these details to us by post, we process them using PayPal, and then securely destroy the paperwork.

If you set up a Direct Debit through this webiste, we use SmartDebit to securely process your bank account details.  This information is not available to any member of staff, and is not stored on any system.  Paper direct debits are entered into the SmartDebit system, scanned for our records into our secure database, and then destroyed.



Google Analytics

Collect information about how visitors use our site. We use the information to compile reports and to help us improve the site. The cookies collect information in an anonymous form, including the number of visitors to the site, where visitors have come to the site from and the pages they visited.

For more information

See Google Analytics Privacy Policy.

Website Login and Menu

A cookie is used to set the current/active page on the website menu and also for the members login area. These cookies are used only for these purposes and are not tracked in any way.


Features for sharing videos via YouTube, and remembering what videos you’ve seen.

For more information

See Google Privacy Policy


Features for sharing via Facebook. Does not set a cookie by itself, but if one is present it will read it.

For more information

See Facebook Privacy Policy

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