Duchenne UK Privacy Policy

What this privacy policy covers

Duchenne UK (‘DUK’) is committed to protecting your personal information, whether you are a fundraiser, donor or volunteer. This policy explains how DUK collects and uses the personal information you provide to us, whether online, via phone, email, in letters or in any other correspondence. In some of the other ways that we interact with you, additional terms and conditions may also apply that set out additional ways in which we will use your personal information. We ensure that we use your information in accordance with all applicable laws concerning data protection. This policy explains:

What information DUK may collect about you;
How we will use that information;
Whether we disclose your details to anyone else;
Your choices regarding the information you provide to us.

By using our website or any of our services, or providing us with any personal data, you agree to your personal data being used and disclosed in the manner set out in this policy.

Who we are

DUK is a registered charity fundraising and campaigning for Duchenne Muscular Dystrophy. Our registered charity number in England is: 1147094

Information collection

We may collect personal information about you when you enquire about our activities, register with us for our newsletters, engage with our social media channels, make a donation to us, register for an event, participate in research or surveys or otherwise provide us with personal information. This can include information such as your name, postal address, email address, phone number, expressions of opinion, credit/debit card details and whether you are a tax payer so that we can claim Gift Aid. We may also receive such information about you from third parties.

We will only collect ‘sensitive personal data’ where there is a clear reason for doing so. For example we collect specific health information about participants in the Duchenne Dash (our main fundraising event, which takes the form of an annual bike ride) and may also do so for other similar fundraising events to ensure that we provide appropriate facilities or support to enable you to participate safely in the event. Where we collect ‘sensitive personal data’ we will only do so with your consent. We will make it clear to you when collecting this information as to what we are collecting and why.

How we may use your information

We may use your information for a number of purposes including the following:

To provide you with the services, products or information you have requested or which we feel may interest you where you have consented to being contacted;
To process donations we may receive from you;
To fundraise in accordance with our internal policies and procedures;
To provide you with information about our work or our activities that you have agreed to receive;
For administration purposes (for example we may contact you regarding a donation you have made or the event you have registered for);
For internal record keeping, including the management of any feedback or complaints;
To invite you to participate in surveys or research (although this is voluntary);
To use IP addresses to identify your approximate location, to block disruptive use and to record website traffic
To [use cookies to] personalise the way our information is presented to you on the website, to analyse and improve the services offered on our site to make it as user-friendly as possible;
To ensure your safety when you participate in our fundraising activities (for example we collect health data from participants in the Duchenne Dash to check that they should be able to cope with the rigours of the ride);
We may analyse the personal information we collect to create a profile of your interests and preferences so that we can contact you in the most appropriate way and with the most relevant information;
Where it is required or authorised by law; and
We may assess your personal information for the purposes of credit risk reduction or fraud prevention.

Retention of your information

We will retain your personal information only as long as necessary to fulfil the purposes identified above, or as required by law.

Information sharing and disclosure

DUK does not sell, trade, or rent your personal information to others.
We may need to share your information with our service providers, associated organisations and agents for the purposes outlined above (including for the purpose of organising appropriate support services and facilities for events) and may also disclose your information in an emergency situation that requires it or where we are legally required to do so.

Marketing materials

We may contact you for marketing purposes by email if you have agreed to be contacted in this manner for marketing purposes and do not opt-out of receiving further marketing information.

If you have provided us with your postal address or telephone number we may send you direct mail or telephone you about our work unless you have told us that you would prefer not to receive such information.

It is your choice as to whether you want to receive information about our work and the ways you can get involved. You may opt-out of marketing emails at any time by clicking the ‘unsubscribe’ link in our marketing emails.

You can also change any of your contact preferences at any time (including telling us that you don’t want us to contact you for marketing purposes by telephone, or send you direct marketing by post) by contacting us by email: duchenne@duchenneuk.org or by writing to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD

We will not use your information for marketing purposes if you have indicated that you do not wish to be contacted for such purposes. However, we will retain your details on a suppression list to help ensure that we do not continue to contact you.

Access to information and correction

You have the right to request a copy of the information that we hold about you (for which me may change a small fee). You also have the risk to have any inaccuracies in your information corrected. If you would like to exercise these rights please email: duchenne@duchenneuk.org or write to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD.

Changes to our privacy policy

DUK keeps this Privacy Policy under regular review and we will place any updates on this webpage. Please check back from time to time to see any updates.

How to contact us

Please contact us if you have any questions about our privacy policy or information which we hold about you either:

by email: duchenne@duchenneuk.org
or by writing to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD.

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1. Definitions In the context of these terms and conditions, the following words shall have the following meanings: “Duchenne UK” means Duchenne UK, a charity registered under number 1147094 and a company limited by guarantee (company number: 8030768), having its registered office at 11 Bedford Road, London W4 1JD; “the Website” means any website under the ownership or control of Duchenne UK from which a link has been created to these terms and conditions; “the Material” means all of the information, data, text, graphics, links or computer code published on, contained or available on the Website; “User” means the individual, firm, company or organisation accessing this website or making an Order; 2. Applicable terms and conditions The Website is owned by Duchenne UK and any use made of this site (including registrations and donations made via the Website), are subject to these terms and conditions. Duchenne UK may, at its sole discretion, modify or revise these terms and conditions at any time by updating the text of this page. 3. Use of the Website Anyone is entitled to view any non-password protected parts of the Website and those that register can use password protected parts of the website to use for their own purposes the information contained therein, provided: 3.1 it is used for information purposes only, for reproduction for personal use only and not for reproduction on any other website or for commercial gain. 3.2 any links created to the Website are notified to and approved by Duchenne UK before they are created. 3.3 no part of the Website is copied, stored in a retrieval system, or transmitted in any form or by any means to any third party without the written permission of Duchenne UK. 3.4 You will not send or otherwise post unauthorized commercial communications to users (such as spam). 3.5 You will not collect users’ information, without our permission. 3.6 You will not upload viruses or other malicious code. 3.7 You will not solicit login information or access an account belonging to someone else. 3.8 You will not bully, intimidate, or harass any user. 3.9 You will not post content that is hateful, threatening, pornographic, or that contains nudity or graphic or gratuitous violence. 3.10 You will not develop or operate a third party application containing, or advertise or otherwise market alcohol related or other mature content without appropriate age-based restrictions. 3.11 You will not use the Duchenne UK website to do anything unlawful, misleading, malicious, or discriminatory. 3.12 You will not facilitate or encourage any violations of this Statement. 3.13 You will not provide any false personal information on the Duchenne UK site, or create an account for anyone other than yourself without permission. 3.14 You will not use the Duchenne UK website if you are a convicted sex offender. 3.16 You will keep your contact information accurate and up-to-date. 3.17 You will not share your password, let anyone else access your account, or do anything else that might jeopardize the security of your account. 3.18 You will not transfer your account to anyone without first getting our written permission. 4. Protecting Other People’s Rights 4.1 We respect other people’s rights, and expect you to do the same. 4.2 You will not post content or take any action on the Duchenne UK website that infringes someone else’s rights or otherwise violates the law. 4.3 We can remove any content you post on the Duchenne UK website if we believe that it violates this Statement. 4.4 If we removed your content for infringing someone else’s copyright, and you believe we removed it by mistake, we will provide you with an opportunity to appeal. 4.5 If you repeatedly infringe other people’s intellectual property rights, we will disable your account when appropriate. 4.6 If you collect information from users, you will: obtain their consent, make it clear you are the one collecting their information, and post a privacy policy explaining what information you collect and how you will use it. 4.7 You will not post anyone’s identification documents or sensitive financial information on the Duchenne UK website. 5. Copyright and trade marks 5.1 Copyright in the Material is owned by Duchenne UK or its content suppliers. Unauthorised use of the Material including reproduction, storage, modification, distribution or republication without the prior written consent of Duchenne UK or, where applicable, the respective copyright owner(s) is prohibited. 5.2 The names and logos of Duchenne UK and all related product and service names, designs marks and slogans are the trade names, service marks or trade marks of Duchenne UK and may not be used without the prior consent of Duchenne UK. 5.3 All works in the nature of databases attract database rights. 6. Disclaimer The website is intended to provide general information only and, as such, should not be considered as a substitute for advice covering any specific situation. Users should seek appropriate advice before taking or refraining from taking any action in reliance on any information contained in this website. So far as permissible by law, Duchenne UK does not accept any liability to any person relating to the use of any such information. Whilst Duchenne UK has taken every precaution in compiling this site neither it nor any contributors to the site can be held responsible for any action (or the lack thereof) taken by any person or organisation wherever they shall be based, as a result, direct or otherwise, on information contained in or accessed through this internet site. 7. Target audience The Website is intended for use by UK residents and only in relation to their activities within the UK. It may be dangerous to apply any of the information on the Website to activities outside the UK. Duchenne UK does not represent or warrant that the information accessible via the Website is accurate, complete or correct. Duchenne UK has no liability whatsoever in respect of any use which you make of such information except in the case of personal injury or death caused by the negligence of Duchenne UK. The information provided on this Website has not been written to meet individual requirements and it is your sole responsibility to satisfy yourself prior to using the information in any way for your purposes. Before making any decisions based on the information contained on the Website, you are strongly advised to refer to alternative, independent sources of information to substantiate the basis for your decision. 8. Warranty and indemnity The User warrants to Duchenne UK that it will not use the Website, the Material or any part thereof for any purpose that is in contravention of any applicable law or regulation or in a manner that will infringe the copyright, trademarks, service marks or other intellectual property rights of third parties or violate the privacy, publicity or other personal rights of others or in any defamatory, obscene, threatening, abusive or hateful manner.The User shall indemnify Duchenne UK, its employees and agents, harmless against all claims, liability, losses, damages and expenses including, without limitation, legal fees and costs arising out of or incurred as a result of any claims made, or litigation brought, against Duchenne UK, its employees and agents, as a result of the use by the User of the Website, the Material or any part thereof for whatever purpose, to the fullest extent permitted by law. 9. Limitation of liability Duchenne UK hereby disclaims all warranties and conditions with regard to the Material and any goods or services supplied in relation to the Website, whether express or implied or statutory (including all implied warranties and conditions of merchantability and fitness for a particular purpose). In no event shall Duchenne UK be liable for any indirect, punitive, special, incidental, or consequential damages whatsoever even if Duchenne UK has been advised of the possibility of damages including, without limitation, damages for loss of use, data or profits arising out of or in any way connected with the use or performance of the Website, interruptions or delays to the Website, the provision of or failure to provide services, or for any information, Material, goods and services obtained through the Website or otherwise arising out of the use of the Website, whether based on contract, tort or otherwise to the fullest extent permitted by law. 10. Third party websites The Website contains links to websites operated by parties other than Duchenne UK. Such links are provided for the User’s convenience only. Duchenne UK does not control such websites, and is not responsible for their content. Duchenne UK inclusion of links to such websites does not imply any endorsement of the material on such websites or any association with their operators. The User is solely responsible for evaluating the accuracy and completeness of any information contained on the third party websites, and also the value and integrity of any goods and services offered by such websites. 11. Privacy and Data Protection Policy Duchenne UK is committed to protecting your personal information, whether you are a fundraiser, donor or volunteer. This policy explains how Duchenne UK collects and uses the personal information you provide to us, whether online, via phone, email, in letters or in any other correspondence. In some of the other ways that we interact with you, additional terms and conditions may also apply that set out additional ways in which we will use your personal information. We ensure that we use your information in accordance with all applicable laws concerning data protection. This policy explains: • What information Duchenne UK may collect about you; • How we will use that information; • Whether we disclose your details to anyone else; • Your choices regarding the information you provide to us. By using our website or any of our services, or providing us with any personal data, you agree to your personal data being used and disclosed in the manner set out in this policy. Information collection We may collect personal information about you when you enquire about our activities, register with us for our newsletters, engage with our social media channels, make a donation to us, register for an event, participate in research or surveys or otherwise provide us with personal information. This can include information such as your name, postal address, email address, phone number, expressions of opinion, credit/debit card details and whether you are a tax payer so that we can claim Gift Aid. We may also receive such information about you from third parties. We will only collect ‘sensitive personal data’ where there is a clear reason for doing so. For example we collect specific health information about participants in the Duchenne Dash (our main fundraising event, which takes the form of an annual bike ride) and may also do so for other similar fundraising events to ensure that we provide appropriate facilities or support to enable you to participate safely in the event. Where we collect ‘sensitive personal data’ we will only do so with your consent. We will make it clear to you when collecting this information as to what we are collecting and why. How we may use your information We may use your information for a number of purposes including the following: • To provide you with the services, products or information you have requested or which we feel may interest you where you have consented to being contacted; • To process donations we may receive from you; • To fundraise in accordance with our internal policies and procedures; • To provide you with information about our work or our activities that you have agreed to receive; • For administration purposes (for example we may contact you regarding a donation you have made or the event you have registered for); • For internal record keeping, including the management of any feedback or complaints; • To invite you to participate in surveys or research (although this is voluntary); • To use IP addresses to identify your approximate location, to block disruptive use and to record website traffic • To [use cookies to] personalise the way our information is presented to you on the website, to analyse and improve the services offered on our site to make it as user-friendly as possible; • To ensure your safety when you participate in our fundraising activities (for example we collect health data from participants in the Duchenne Dash to check that they should be able to cope with the rigours of the ride); • We may analyse the personal information we collect to create a profile of your interests and preferences so that we can contact you in the most appropriate way and with the most relevant information; • Where it is required or authorised by law; and • We may assess your personal information for the purposes of credit risk reduction or fraud prevention. Retention of your information We will retain your personal information only as long as necessary to fulfil the purposes identified above, or as required by law. Information sharing and disclosure • Duchenne UK does not sell, trade, or rent your personal information to others. • We may need to share your information with our service providers, associated organisations and agents for the purposes outlined above (including for the purpose of organising appropriate support services and facilities for events) and may also disclose your information in an emergency situation that requires it or where we are legally required to do so. Marketing materials We may contact you for marketing purposes by email if you have agreed to be contacted in this manner for marketing purposes and do not opt-out of receiving further marketing information. If you have provided us with your postal address or telephone number we may send you direct mail or telephone you about our work unless you have told us that you would prefer not to receive such information. It is your choice as to whether you want to receive information about our work and the ways you can get involved. You may opt-out of marketing emails at any time by clicking the ‘unsubscribe’ link in our marketing emails. You can also change any of your contact preferences at any time (including telling us that you don’t want us to contact you for marketing purposes by telephone, or send you direct marketing by post) by contacting us by email: info@duchenneuk.org or by writing to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD. We will not use your information for marketing purposes if you have indicated that you do not wish to be contacted for such purposes. However, we will retain your details on a suppression list to help ensure that we do not continue to contact you. Access to information and correction You have the right to request a copy of the information that we hold about you (for which me may change a small fee). You also have the risk to have any inaccuracies in your information corrected. If you would like to exercise these rights please email: info@duchenneuk.org or write to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD. Changes to our privacy policy Duchenne UK keeps this Privacy Policy under regular review and we will place any updates on this webpage. Please check back from time to time to see any updates. How to contact us Please contact us if you have any questions about our privacy policy or information which we hold about you either: • by email: info@duchenneuk.org • or by writing to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD 12. Viruses Whilst Duchenne UK makes all reasonable attempts to exclude viruses from the website it cannot ensure such exclusion and no liability is accepted for damage caused through the downloading of viruses. Therefore, you are recommended to take all appropriate safeguards before downloading information from the Website. 13. On-line Transactions Duchenne UK reserves the right to vary event registration fees and the prices of any goods or services listed without notice. All event registrations and orders for goods or services are subject to availability and Duchenne UK reserves the right to refuse to accept any registration and to refuse to supply any goods or services to any individual. 14. Encryption Although the Website uses encryption security software in areas where on line payment details are accepted, the security of information and payments transmitted via the Internet cannot be guaranteed. Any loss incurred or sustained by any User who transmits information by means of e-mail or other Internet links shall be borne solely and exclusively by such User and in no event shall any such loss in whole or part be borne by Duchenne UK or it’s agents. 15. Force majeure Duchenne UK shall not be held to be in breach of its obligations hereunder nor liable to the User for any loss or damage which may be suffered by another party due to any cause beyond its reasonable control including without limitation any act of God, fire, storm, flood, lightening, disease, strike, trade dispute, act of terrorism, any act or omission of government or regulatory bodies or communications operators. 16. General 16.1 If any provisions of these terms and conditions are held to be invalid or unenforceable, the validity or enforceability of the remaining provisions shall not be affected. 16.2 These terms and conditions constitute the entire agreement between Duchenne UK and the User and supercede all other (prior or contemporaneous) communications and proposals, whether electronic or written, between the User and Duchenne UK. 16.3 Any failure of Duchenne UK to exercise or enforce any of its rights under these terms and conditions shall not be deemed to be a waiver of any such rights or operate so as to bar the subsequent exercise or enforcement or any such rights. 17. Jurisdiction The terms and conditions and the use by the User of the Website shall be governed by the laws of England and Wales and the parties hereto submit to the exclusive jurisdiction of the English courts in all disputes arising out of or relating to the Website and/or any transactions made on the Website, or these terms and conditions. 18. Delivery of Goods We aim to deliver all orders within 2-7 days if the goods are in stock. If the goods you order are “Out of Stock” we will send out the order to you as soon as the product becomes available again. If we cannot source the item we will contact you to inform you. 19. Cancellation You can cancel and order and return any gods that may already have been dispatched up to 7 days from receipt (see return policy). Our terms and conditions do not affect your statutory rights. 20. Returns Policy We want you to be happy with your purchase. Please check the goods on delivery and ensure that they are supplied correctly. If any of the goods prove to be unsuitable please return them within 7 days in the original packaging and in an unused condition for a full refund less of any postage costs. (please see returns policy)

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Terms and conditions

1. Definitions

In the context of these terms and conditions, the following words shall have the following meanings:
“Duchenne UK” means Duchenne UK, a charity registered under number 1147094 and a company limited by guarantee (company number: 8030768), having its registered office at 11 Bedford Road, London W4 1JD; “the Website” means any website under the ownership or control of Duchenne UK from which a link has been created to these terms and conditions; “the Material” means all of the information, data, text, graphics, links or computer code published on, contained or available on the Website; “User” means the individual, firm, company or organisation accessing this website or making an Order;
2. Applicable terms and conditions

The Website is owned by Duchenne UK and any use made of this site (including registrations and donations made via the Website), are subject to these terms and conditions. Duchenne UK may, at its sole discretion, modify or revise these terms and conditions at any time by updating the text of this page.
3. Use of the Website

Anyone is entitled to view any non-password protected parts of the Website and those that register can use password protected parts of the website to use for their own purposes the information contained therein, provided:

3.1 it is used for information purposes only, for reproduction for personal use only and not for reproduction on any other website or for commercial gain.

3.2 any links created to the Website are notified to and approved by Duchenne UK before they are created.

3.3 no part of the Website is copied, stored in a retrieval system, or transmitted in any form or by any means to any third party without the written permission of Duchenne UK.

3.4 You will not send or otherwise post unauthorized commercial communications to users (such as spam).

3.5 You will not collect users’ information, without our permission.

3.6 You will not upload viruses or other malicious code.

3.7 You will not solicit login information or access an account belonging to someone else.

3.8 You will not bully, intimidate, or harass any user.

3.9 You will not post content that is hateful, threatening, pornographic, or that contains nudity or graphic or gratuitous violence.

3.10 You will not develop or operate a third party application containing, or advertise or otherwise market alcohol related or other mature content without appropriate age-based restrictions.

3.11 You will not use the Duchenne UK website to do anything unlawful, misleading, malicious, or discriminatory.

3.12 You will not facilitate or encourage any violations of this Statement.

3.13 You will not provide any false personal information on the Duchenne UK site, or create an account for anyone other than yourself without permission.

3.14 You will not use the Duchenne UK website if you are a convicted sex offender.

3.16 You will keep your contact information accurate and up-to-date.

3.17 You will not share your password, let anyone else access your account, or do anything else that might jeopardize the security of your account.

3.18 You will not transfer your account to anyone without first getting our written permission.
4. Protecting Other People’s Rights

4.1 We respect other people’s rights, and expect you to do the same.

4.2 You will not post content or take any action on the Duchenne UK website that infringes someone else’s rights or otherwise violates the law.

4.3 We can remove any content you post on the Duchenne UK website if we believe that it violates this Statement.

4.4 If we removed your content for infringing someone else’s copyright, and you believe we removed it by mistake, we will provide you with an opportunity to appeal.

4.5 If you repeatedly infringe other people’s intellectual property rights, we will disable your account when appropriate.

4.6 If you collect information from users, you will: obtain their consent, make it clear you are the one collecting their information, and post a privacy policy explaining what information you collect and how you will use it.

4.7 You will not post anyone’s identification documents or sensitive financial information on the Duchenne UK website.
5. Copyright and trade marks

5.1 Copyright in the Material is owned by Duchenne UK or its content suppliers. Unauthorised use of the Material including reproduction, storage, modification, distribution or republication without the prior written consent of Duchenne UK or, where applicable, the respective copyright owner(s) is prohibited.

5.2 The names and logos of Duchenne UK and all related product and service names, designs marks and slogans are the trade names, service marks or trade marks of Duchenne UK and may not be used without the prior consent of Duchenne UK.

5.3 All works in the nature of databases attract database rights.
6. Disclaimer

The website is intended to provide general information only and, as such, should not be considered as a substitute for advice covering any specific situation. Users should seek appropriate advice before taking or refraining from taking any action in reliance on any information contained in this website. So far as permissible by law, Duchenne UK does not accept any liability to any person relating to the use of any such information.
Whilst Duchenne UK has taken every precaution in compiling this site neither it nor any contributors to the site can be held responsible for any action (or the lack thereof) taken by any person or organisation wherever they shall be based, as a result, direct or otherwise, on information contained in or accessed through this internet site.
7. Target audience

The Website is intended for use by UK residents and only in relation to their activities within the UK. It may be dangerous to apply any of the information on the Website to activities outside the UK.

Duchenne UK does not represent or warrant that the information accessible via the Website is accurate, complete or correct. Duchenne UK has no liability whatsoever in respect of any use which you make of such information except in the case of personal injury or death caused by the negligence of Duchenne UK.

The information provided on this Website has not been written to meet individual requirements and it is your sole responsibility to satisfy yourself prior to using the information in any way for your purposes. Before making any decisions based on the information contained on the Website, you are strongly advised to refer to alternative, independent sources of information to substantiate the basis for your decision.

8. Warranty and indemnity

The User warrants to Duchenne UK that it will not use the Website, the Material or any part thereof for any purpose that is in contravention of any applicable law or regulation or in a manner that will infringe the copyright, trademarks, service marks or other intellectual property rights of third parties or violate the privacy, publicity or other personal rights of others or in any defamatory, obscene, threatening, abusive or hateful manner.The User shall indemnify Duchenne UK, its employees and agents, harmless against all claims, liability, losses, damages and expenses
including, without limitation, legal fees and costs arising out of or incurred as a result of any claims made, or litigation brought, against Duchenne UK, its employees and agents, as a result of the use by the User of the Website, the Material or any part thereof for whatever purpose, to the fullest extent permitted by law.
9. Limitation of liability

Duchenne UK hereby disclaims all warranties and conditions with regard to the Material and any goods or services supplied in relation to the Website, whether express or implied or statutory (including all implied warranties and conditions of merchantability and fitness for a particular purpose). In no event shall Duchenne UK be liable for any indirect, punitive, special, incidental, or consequential damages whatsoever even if Duchenne UK has been advised of the possibility of damages including, without limitation, damages for loss of use, data or profits arising out of or in any way connected with the use or performance of the Website, interruptions or delays to the Website, the provision of or failure to provide services, or for any information, Material, goods and services obtained through the Website or otherwise arising out of the use of the Website, whether based on contract, tort or otherwise to the fullest extent permitted by law.
10. Third party websites

The Website contains links to websites operated by parties other than Duchenne UK. Such links are provided for the User’s convenience only. Duchenne UK does not control such websites, and is not responsible for their content. Duchenne UK inclusion of links to such websites does not imply any endorsement of the material on such websites or any association with their operators. The User is solely responsible for evaluating the accuracy and completeness of any information contained on the third party websites, and also the value and integrity of any goods and services offered by such websites.
11. Privacy and Data Protection Policy
Duchenne UK is committed to protecting your personal information, whether you are a fundraiser, donor or volunteer. This policy explains how Duchenne UK collects and uses the personal information you provide to us, whether online, via phone, email, in letters or in any other correspondence. In some of the other ways that we interact with you, additional terms and conditions may also apply that set out additional ways in which we will use your personal information. We ensure that we use your information in accordance with all applicable laws concerning data protection. This policy explains:
• What information Duchenne UK may collect about you;
• How we will use that information;
• Whether we disclose your details to anyone else;
• Your choices regarding the information you provide to us.
By using our website or any of our services, or providing us with any personal data, you agree to your personal data being used and disclosed in the manner set out in this policy.
Information collection
We may collect personal information about you when you enquire about our activities, register with us for our newsletters, engage with our social media channels, make a donation to us, register for an event, participate in research or surveys or otherwise provide us with personal information. This can include information such as your name, postal address, email address, phone number, expressions of opinion, credit/debit card details and whether you are a tax payer so that we can claim Gift Aid. We may also receive such information about you from third parties.
We will only collect ‘sensitive personal data’ where there is a clear reason for doing so. For example we collect specific health information about participants in the Duchenne Dash (our main fundraising event, which takes the form of an annual bike ride) and may also do so for other similar fundraising events to ensure that we provide appropriate facilities or support to enable you to participate safely in the event. Where we collect ‘sensitive personal data’ we will only do so with your consent. We will make it clear to you when collecting this information as to what we are collecting and why.
How we may use your information
We may use your information for a number of purposes including the following:
• To provide you with the services, products or information you have requested or which we feel may interest you where you have consented to being contacted;
• To process donations we may receive from you;
• To fundraise in accordance with our internal policies and procedures;
• To provide you with information about our work or our activities that you have agreed to receive;
• For administration purposes (for example we may contact you regarding a donation you have made or the event you have registered for);
• For internal record keeping, including the management of any feedback or complaints;
• To invite you to participate in surveys or research (although this is voluntary);
• To use IP addresses to identify your approximate location, to block disruptive use and to record website traffic
• To [use cookies to] personalise the way our information is presented to you on the website, to analyse and improve the services offered on our site to make it as user-friendly as possible;
• To ensure your safety when you participate in our fundraising activities (for example we collect health data from participants in the Duchenne Dash to check that they should be able to cope with the rigours of the ride);
• We may analyse the personal information we collect to create a profile of your interests and preferences so that we can contact you in the most appropriate way and with the most relevant information;
• Where it is required or authorised by law; and
• We may assess your personal information for the purposes of credit risk reduction or fraud prevention.
Retention of your information
We will retain your personal information only as long as necessary to fulfil the purposes identified above, or as required by law.
Information sharing and disclosure
• Duchenne UK does not sell, trade, or rent your personal information to others.
• We may need to share your information with our service providers, associated organisations and agents for the purposes outlined above (including for the purpose of organising appropriate support services and facilities for events) and may also disclose your information in an emergency situation that requires it or where we are legally required to do so.
Marketing materials
We may contact you for marketing purposes by email if you have agreed to be contacted in this manner for marketing purposes and do not opt-out of receiving further marketing information.
If you have provided us with your postal address or telephone number we may send you direct mail or telephone you about our work unless you have told us that you would prefer not to receive such information.
It is your choice as to whether you want to receive information about our work and the ways you can get involved. You may opt-out of marketing emails at any time by clicking the ‘unsubscribe’ link in our marketing emails.
You can also change any of your contact preferences at any time (including telling us that you don’t want us to contact you for marketing purposes by telephone, or send you direct marketing by post) by contacting us by email: info@duchenneuk.org or by writing to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD.
We will not use your information for marketing purposes if you have indicated that you do not wish to be contacted for such purposes. However, we will retain your details on a suppression list to help ensure that we do not continue to contact you.
Access to information and correction
You have the right to request a copy of the information that we hold about you (for which me may change a small fee). You also have the risk to have any inaccuracies in your information corrected. If you would like to exercise these rights please email: info@duchenneuk.org or write to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD.
Changes to our privacy policy
Duchenne UK keeps this Privacy Policy under regular review and we will place any updates on this webpage. Please check back from time to time to see any updates.
How to contact us
Please contact us if you have any questions about our privacy policy or information which we hold about you either:
• by email: info@duchenneuk.org
• or by writing to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD
12. Viruses

Whilst Duchenne UK makes all reasonable attempts to exclude viruses from the website it cannot ensure such exclusion and no liability is accepted for damage caused through the downloading of viruses. Therefore, you are recommended to take all appropriate safeguards before downloading information from the Website.
13. On-line Transactions

Duchenne UK reserves the right to vary event registration fees and the prices of any goods or services listed without notice. All event registrations and orders for goods or services are subject to availability and Duchenne UK reserves the right to refuse to accept any registration and to refuse to supply any goods or services to any individual.
14. Encryption

Although the Website uses encryption security software in areas where on line payment details are accepted, the security of information and payments transmitted via the Internet cannot be guaranteed. Any loss incurred or sustained by any User who transmits information by means of e-mail or other Internet links shall be borne solely and exclusively by such User and in no event shall any such loss in whole or part be borne by Duchenne UK or it’s agents.
15. Force majeure

Duchenne UK shall not be held to be in breach of its obligations hereunder nor liable to the User for any loss or damage which may be suffered by another party due to any cause beyond its reasonable control including without limitation any act of God, fire, storm, flood, lightening, disease, strike, trade dispute, act of terrorism, any act or omission of government or regulatory bodies or communications operators.
16. General

16.1 If any provisions of these terms and conditions are held to be invalid or unenforceable, the validity or enforceability of the remaining provisions shall not be affected.

16.2 These terms and conditions constitute the entire agreement between Duchenne UK and the User and supercede all other (prior or contemporaneous) communications and proposals, whether electronic or written, between the User and Duchenne UK.

16.3 Any failure of Duchenne UK to exercise or enforce any of its rights under these terms and conditions shall not be deemed to be a waiver of any such rights or operate so as to bar the subsequent exercise or enforcement or any such rights.
17. Jurisdiction

The terms and conditions and the use by the User of the Website shall be governed by the laws of England and Wales and the parties hereto submit to the exclusive jurisdiction of the English courts in all disputes arising out of or relating to the Website and/or any transactions made on the Website, or these terms and conditions.
18. Delivery of Goods

We aim to deliver all orders within 2-7 days if the goods are in stock. If the goods you order are “Out of Stock” we will send out the order to you as soon as the product becomes available again. If we cannot source the item we will contact you to inform you.
19. Cancellation

You can cancel and order and return any gods that may already have been dispatched up to 7 days from receipt (see return policy). Our terms and conditions do not affect your statutory rights.
20. Returns Policy

We want you to be happy with your purchase. Please check the goods on delivery and ensure that they are supplied correctly. If any of the goods prove to be unsuitable please return them within 7 days in the original packaging and in an unused condition for a full refund less of any postage costs. (please see returns policy)

I accept the terms and conditions

Latest

Duchenne UK launches the DMD HUB

The Hub is a network of trial sites - and staff - trained and funded to carry out clinical trials for Duchenne Muscular Dystrophy. The Hub’s aim, is to make more clinical sites trial ready by providing training, mentoring and resources to help them run clinical trials.
First Patients Enrolled in UK’s Early Access to Medicines Scheme for Santhera’s Raxone® in Duchenne Muscular Dystrophy (DMD)

Duchenne UK is pleased to share an update from Santhera Pharmaceuticals that the first DMD patients have been enrolled into the UK’s EAMS for Raxone®.
Sarepta Therapeutics Announces Positive Results in Its Study Evaluating Gene Expression, Dystrophin Production, and Dystrophin Localization in Patients with DMD

Read the full press release from Sarepta here.
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