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