Our policies

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.

• 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.

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.

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.

• 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.