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 or with any interactions with the Charity as a whole.

Who we are

CMT United Kingdom (working name Charcot-Marie-Tooth UK)

Charity number: 1112370
Company number: 05574584
Registered office: 3 Groveley Road, Christchurch, BH23 3HB

How we use your personal information

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.  Phone calls are recorded, but are automatically deleted after one month.

When you complete the online membership 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 – this is known as “legitimate interest”.  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.

What we process about you if you are a member or contact, or use our services and support:

  • Your membership: we hold your contact information, records of your payments and interactions, copy letters and forms, and use these to keep your membership up to date, send you subscription reminders, magazines, AGM mailings and information, event information etc.
  • Administer payments: 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 website or send us a paper direct debit mandate, we use SmartDebit to securely process your bank account details.  If you do this online, your account 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.
  • Administer Gift Aid and Gift Aid declaration forms.
  • Provide you with membership services and information.  To this we may ask about your CMT Type, which is categorised as “sensitive information” about you.  This information, your type of CMT (if you have given us this information), may be shared, on an anonymised basis, with researchers – for instance, if they ask us how many people with CMT Type 1a, we may be able to give a number to them. We hold no further medical information about you.
  • Ask you to complete occasional surveys, anonymous or otherwise, either relating to your condition or asking for you to comment on issues that are important to people affected by CMT, or from researchers. Your participation is, of course, entirely voluntary.
  • We continually also monitor and improve our information, services and support and would like update you occasionally on these, via our E-Newsletter.
  • We also may collect information you have posted via social media – we occasionally ask questions to gather feedback or additional information to help improve services or monior issues within our community.  We tell you in the post if we plan to save this information for further use.
  • We may promote fundraising activities.

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 scheme

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.

Your rights

You can contact us to request a copy of any information we hold about you, ask us to correct or remove any inaccurate information or ask us to delete some or all of the information we have collected about you and your family at any time, and at no cost.

You have the right to be forgotten – which means Charcot-Marie-Tooth UK will remove all information that it holds on you.  The only exception to that is if we have a legal obligation to keep your data in order to fulfil a contract (commercial or service) with you – ie, tickets to an event that you have just purchased. If you want to be ‘forgotten’ please contact the office on the details below. This cannot apply to social media, you are responsible for posts you have made on our social media site, and therefore must remove them yourself.

It is your right to request any personal information that we hold on you as part of an ‘access request’.  This comes at no cost to you and we are committed to providing that information to you within 1 month. Please send your access requests to the office details below.

You can unsubscribe from any of our communications at the bottom of each of our mailings, or by unfollowing us on social media channels. If you want to call us to be unsubscribed manually from anything that we send you, please contact the office and we will do that for you.

It is our commitment that we will only collect relevant information on you. If you have been asked to fill in your details and want to know why we have asked for a specific piece of information, contact us and we will explain why.

It is our policy to ensure that it is clear whenever you interact with us, what you are signing up to receive. If you ever have questions on that, please don’t hesitate to get in touch.

Contact us here


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

Last Updated: Thursday 6th December, 2018