Privacy Policy

The following statement explains our policy regarding the personal information we collect about you.

The DMD Hub is run and operated by Duchenne UK, a charity which raises money to fund and accelerate treatments for Duchenne muscular dystrophy. Duchenne UK seeks to:

  • Invest in innovative and effective treatments for Duchenne
  • Educate the general public, and families, on the disease

Duchenne UK is a Registered Charity (1147094) and a Registered Data Controller (ZA546430)

 What personal information do we collect?

Personal information is any information which enables Duchenne UK to recognise you as an individual. Duchenne UK collects the following data with your consent:

  • Your name
  • Your email (if you sign up to the Duchenne UK or an associated Duchenne UK newsletter)
  • Bank details (if you make a donation)
  • Address (if you make a donation and select Gift aid)

How does Duchenne UK collect your data?

Duchenne UK will process the information you provide for the purposes stated during its collection.  Duchenne UK will collect data and process data when you:

  • Sign up to the newsletter
  • Make a donation
  • Complete a voluntary survey

The website does not automatically capture or store personal information, other than logging the user’s IP address and session information, such as the duration of the visit or the type of browser used. This is only used to provide statistics so as to evaluate the use of the site. For more information about Cookies, please see below.

How will Duchenne UK use your data?

If Duchenne UK believes there may be information which would be useful to you, for example events that Duchenne UK is hosting specifically for parents, caregivers or clinicians, Duchenne UK may contact you under legitimate interest. In all communication, you have an option to unsubscribe. 

Links to other websites included on the DMD Hub website, such as those of sites which are part of the DMD Hub network, are not managed by Duchenne UK. As such, Duchenne UK has no control over their content or privacy policy.

Retention of data

Duchenne UK stores your personal information only for so long as may be necessary. Duchenne UK will not sell, trade or rent your personal information to others, and will only share your information with our service providers.

Your data will be collected and stored on Duchenne UK’s database. All platforms have the appropriate security and safety measures around them to protect your data, and they do not have the ability to use your data without Duchenne UK’s knowledge or consent.

In an emergency and/or as required by law, Duchenne UK may disclose your information without your consent.

Your rights over your personal information

You have the following rights in respect of personal information about you which is held by Duchenne UK:

  • The right to know how Duchenne UK uses your data.
  • The right to access your data – you can request a copy of the information Duchenne UK holds about you, which will be provided free of charge within one month. If there are repeated or burdensome requests for your data, there may be a charge.
  • The right of rectification – you can ask Duchenne UK to update or amend the information held about you if it is incorrect.
  • The right of portability – you can ask for a copy of your data in electronic form.
  • The right to restrict processing – you can ask Duchenne UK to stop using your information for marketing purposes, or request that Duchenne UK stops processing data about you for certain purposes (e.g. profiling)
  • The right to be forgotten – you can ask Duchenne UK to remove your personal data from their charity records. This is not an absolute right – for example if you have made a donation, Duchenne UK will need to hold the information about the transaction for accounting purposes but Duchenne UK will anonymise any data as far as is possible.

In the event that you are unhappy about how Duchenne UK has handled your request in respect of your personal information held and wish to make a complaint about this, please contact the Information Commissioner’s Office (email address:; telephone number: 0303 123 1113).

Duchenne UK keeps this Privacy Policy under regular review and any updates or amendments will be posted on our website.  This version of our Privacy Policy was most recently updated in July 2019.

How to contact us

If you have any questions about this Privacy Policy or our use of your information generally please do not hesitate to contact:

by email:

by telephone: 0203 096 7496

or by writing to Duchenne UK using the following address:

Duchenne UK, 56 Wood Lane, London W12 7SB


How Cookies are used by The DMD Hub 
Cookies cannot be used to identify you personally. 
These pieces of information are used to improve services for you through, for example:

These cookies usually store a session ID that is not personally identifiable to users, allowing you to move from page to page without having to log-in repeatedly. 
Session cookies are never written on the hard drive and they do not collect any information from your computer. Session cookies expire at the end of your browser session and become no longer accessible after the session has been inactive for a specified length of time, usually 20 minutes.

  1. enabling a service to recognise your device so you don't have to give the same information several times during one task
  2. recognising that you may already have given a username and password so you don't need to do it for every web page requested
  3. measuring how many people are using services, so they can be made easier to use and there's enough capacity to ensure they are fast
  4. analysing data to help us understand how you use our services so we can improve them
    Cookies are stored in the computer's memory only during your browsing session and are automatically deleted from your computer when the browser is closed.

Our use of third party Cookies

We do use Google Analytics software to help us improve the usability of our website, the type of information gathered relates to the amount of time spent on the website and the pages visited. No personal information is held. 

Google Analytics

Cookie Name: _utma 
Typical content: randomly generated number 
Cookie Expires: 2 years

Cookie Name: _utmb 
Typical content: randomly generated number 
Cookie Expires: 30 minutes

Name: _utmc 
Typical content: randomly generated number 
Expires: when user exits browser
Cookie Name: _utmz 
Typical content: randomly generated number and information about how the page was reached (eg directly or via a link, organic search or paid search) 
Cookie Expires: 6 months

Cookie Name: __utmmobile 
Typical content: randomly generated number 
Cookie Expires: 2 years 

For further details on the cookies set by Google Analytics, see the link below.
Cookies set by Google Analytics

How to opt out of cookies
Our website works better with cookies enabled. Our cookies don't give us or anyone else access to your personal data. We advise you to keep cookies enabled. However, you can choose to reject cookies.
You can use your browser to delete and reject cookies. There are instructions on how to delete cookies and how to control cookies on the 'About Cookies' website.

We have placed cookies on your computer to help make this website better. For more information please click here

By continuing to use this site or closing this panel, we'll assume you're OK to continue. You can view our full privacy policy here