Our policies

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Privacy Policy

The Duchenne Research Fund respects your privacy and is fully committed to protecting your personal information. When we collect personal information, we aim to be clear about how and why we will use it, and to keep it safe. Our use of personal information enables us to operate, fundraise and fund research more efficiently, thereby helping us in our aim to combat Duchenne muscular dystrophy.

Last updated: 1 June 2020

Who we are

The Duchenne Research Fund (“DRF”, “we”, “us” or “our”) is a charity registered in England and Wales (registered charity number 1119068). By using our website, or providing us with any personal information, you agree to your personal information being used and disclosed in the manner set out in this policy.

What this privacy policy covers:

How we collect your information
We may collect personal information about you when you enquire about our activities, register to receive our newsletters, engage with our social media channels, make a donation to us, register for an event or otherwise provide us with personal information. This may be done online via our website, by 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.

Data we collect may include information such as your name, postal address, email address, phone number, date of birth, age, gender, expressions of opinion, and whether you are a UK taxpayer so that we can claim Gift Aid. Wherever practically possible, we will make it clear to you when collecting this information as to what we are collecting and why.

If you apply to DRF for a grant, we may collect information necessary to process your application. We may supplement this with information from publicly available sources.

We may also receive data about you from third parties, for example independent event organisers; fundraising sites such as Just Giving or Virgin Money Giving; or your institution or principal investigator if you are a researcher. You should check any privacy policy provided to you where you give your data to a third party.

We will only collect ‘sensitive personal data’ where there is a clear reason for doing so – for example, we may collect data relating to your health for health and safety purposes if you are taking part in a sporting event organised by DRF. We may also do so for other similar fundraising events to ensure that we provide appropriate facilities and/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.

DRF does not currently collect or store credit or debit card details. Credit or debit card donations made via our website are processed by an external supplier, currently Paypal, and are not passed on to DRF.

We are not responsible for the privacy practices or content of any other website or service that is linked to our website, or for the privacy practices of any third party social media or other service providers that you can access through our website. We encourage you to read the privacy policies of those websites or service providers.

How we may use your information
  • To administer your donation or support your fundraising activities, including processing Gift Aid claims;
  • To keep a record of your relationship with us and correspond with you where necessary;
  • To provide you with information about our work or activities that you have requested;
  • To monitor website traffic;
  • To assist you if you encounter any technical issues with our website or online forms;
  • To further the charitable objectives of the DRF;
  • To manage our events;
  • To fundraise in accordance with our internal policies and procedures;
  • For internal record keeping, including the management of any feedback or complaints;
  • To audit and administer our accounts
  • To administer, review and keep and internal record of staff, supporters volunteers and researchers;
  • Where it is required or authorised by law; and
  • To undertake credit risk reduction or fraud prevention.
How we may inform your of our work or activities
If you have donated to or fundraised for the DRF, we will send you an email report a few times a year briefly outlining how we are using your funds to support our work – provided we have your consent to do so. We only send between two and four reports a year, and only when we have relevant new information to share with you. You can alter your subscription preferences or opt out of receiving this report at any time by clicking the ‘update subscription preferences’ or ‘unsubscribe’ links in the email.

We may send you information by email about our fundraising activities or events by email if you have agreed to be contacted in this manner and do not opt-out of receiving further marketing information. It is your choice as to whether you want to receive information about our activities and the ways you can get involved. You may update your subscription preferences at any time, or opt-out of receiving emails at any time by following the relevant links in our emails.

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

You can also change any of your contact preferences at any time by contacting us by email: privacy@duchenne.org.uk or by writing to us at the following address: Duchenne Research Fund, Symal House, 423 Edgware Road, London NW9 0HU, United Kingdom.

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.

Lawful basis for processing
For some processing of personal information, we will ask for your consent. However, some processing will be based on the legitimate interests of the DRF, if it is reasonably necessary to do so. Our legitimate interests are outlined above in the ‘How we may use your information’ section, above. We only rely on legitimate interests where we consider that we are not using your data in a way you would not expect, taking into account your rights and interests.
Security and storage of personal information
We ensure there are appropriate technical and organisational measures in place to protect your information – for example, by using encrypted forms on our website. Your personal information may be stored and maintained in a secure cloud-based environment, which can be accessed only by authorised staff. However, as no data transmission over the internet or information stored on servers accessible through the internet can be guaranteed to be fully secure, we cannot ensure or warrant the security of any information you send to us or receive from us online.
Retention of personal information
We will retain your personal information only as long as necessary to fulfil the purposes outlined in this policy, or as required by law. We have specific criteria in place to determine the length of time required for each purpose.
Disclosure of personal information
We will never sell, trade, or rent your personal information to others. However, we may need to share your information with our service providers, associated organisations and agents for other purposes outlined in this policy – for example, for the purpose of organising appropriate support services and facilities for events. We will only provide your personal information to the extent required for a third party to fulfil that contract, or where you would reasonably expect us to disclose the information for a particular purpose.

We may also disclose your information in an emergency situation that requires it or where we are required to do so for legal or regulatory purposes.

Your rights
Under the new General Data Protection Regulation 2018, you have increased rights over personal information that we hold about you. The following outlines how we will meet these rights:

  • The right to be informed: When we collect or obtain personal data about you, we will provide you with the relevant privacy information.
  • The right to access: You can request a copy of the information we hold about you, which we will provide within one month as long as we are legally able to do so. Please email privacy@duchenne.org.uk. We may charge a small administrative fee. If there is a legal or regulatory reason why we cannot provide the information, we will let you know.
  • The right to rectification: If you believe any of the personal information we hold about you is inaccurate or incomplete, please let us know either verbally or in writing to privacy@duchenne.org.uk, and we will take reasonable steps to correct it.
  • The right to erasure: Also known as ‘the right to be forgotten’, you can now request for any personal information about you that we hold or process to be erased, either verbally or in writing to privacy@duchenne.org.uk. We will respond to your request within one month, and will let you know if there is any legal requirement for us to continue to process the data.
  • The right to restrict processing: You can ask us to restrict the processing of some or all of your personal information in certain situations. We will respond to your request within one month.
  • The right to data portability: This right only applies to automated information for which you provided consent for us to use or where we used the information to perform a contract with you. In such cases, where technically possible we will take reasonable steps to provide you with a copy of your personal data in a format that can easily be transferred to another organisation.
  • The right to object: You have a right to object to us using your personal information if we are processing your personal information based on our legitimate interests. If you wish to object to us processing your personal information for direct marketing purposes, we will stop processing your information for these purposes as soon as reasonably possible.
  • Rights in relation to automated decision making and profiling: DRF does not process any personal data for automated decision making or for profiling as defined by the Regulation.

If you would like to exercise any of these rights please email: privacy@duchenne.org.uk, or write to us at the following address: Duchenne Research Fund, Symal House, 423 Edgware Road, London NW9 0HU. We will respond to all requests within one month.

Please note that exceptions apply to a number of these rights, and not all rights will be applicable in all circumstances. For more details please visit the individual rights section of the GDPR guidance at www.ico.org.uk.

Changes to our privacy policy
The DRF 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. If we make significant changes to the policy, we will notify you by email.
How to contact us
Please contact us if you have any questions about our Privacy Policy or information which we hold about you. Just drop us an email at privacy@duchenne.org.uk or by writing to us using the following address: Duchenne Research Fund, Symal House, 423 Edgware Road, London NW9 0HU, United Kingdom.

Cookies Notice

What are cookies?

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Why do we use cookies?

Cookies help us improve and develop the way our website works, in order to provide you with a better user experience.
For example, we use analytical cookies that allow us to recognise, measure and track visitors. For these purposes, we may store the following: the name of the domain from which you accessed the internet; the date and time you accessed our website; the link or internet address of the website from which you linked directly to our website; the pages you accessed while visiting our website; the device from which you accessed our website; the location from which you accessed our website.
We may also use cookies for functional purposes, which store information temporarily in order to facilitate the operational aspects of certain parts our site.

Amending cookie preferences

If you wish to remove cookies set by our website from your browser in the future, you may delete them. The instructions for removing cookies from your computer or mobile device depend on the operating system and web browser you use. Please note, however, that withdrawing your agreement to the use of cookies on our website may impair the functionality of our website, and your user experience.

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Website disclaimer

All information, content, and material of this website is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider. Images are for illustrative purposes only. Although we make reasonable efforts to update the information on our website, we make no representations, warranties or guarantees that the content on our website is accurate, complete or up to date. We accept no responsibility and cannot be liable for the website being temporarily unavailable due to technical issues beyond our control. The website may also include links to other websites or resources which are beyond our control. Such links are provided for your convenience only and we cannot make any warranties or guarantees in relation to such content.

Our mission

We aim to stop Duchenne muscular dystrophy being a death sentence for hundreds of thousands of boys worldwide.

Our impact

We are helping turn the hope of treatments into reality. Critical supportive drugs are in clinical trial thanks to our funds.

Your help

In the last 3 years we have given more than £1.5m to ground-breaking research projects.
And there is still work to do.