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: [email protected] 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: [email protected] 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: [email protected]
or by writing to us using the following address: Duchenne UK, 11 Bedford Road, London W4 1JD.

Latest

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We are excited to share the news with the Duchenne community highlighting an important advancement in the Phase 1b, Multicenter, Open-label, Single Ascending Dose Study.
Soy Products Study: Your Questions Answered

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VISION-DMD Update:

VISION-DMD is an EC funded project undertaking Phase 2 clinical studies on vamorolone, a new treatment for DMD. Vamorolone (also known as VBP15) is a dissociative steroid designed to have the efficacy of a steroid, without the severe associated side effects. The first Phase 2b study site is expected to open for recruitment in April 2018
An update on soy product research funded by Duchenne UK

In August 2016 Duchenne UK commissioned Professor Steve Winder at The University of Sheffield to investigate a nutraceutical soy product called Haelan 951, as a treatment for Duchenne muscular dystrophy. Results of the study published today in PLOS Currents.