Privacy and cookies policy

  1. Introduction

1.1 We are committed to safeguarding the privacy of our website visitors and service users; in this policy we explain how we will handle your personal data.

1.2 We will ask you to consent to our use of cookies in accordance with the terms of this policy when you first visit our website.

1.3 This privacy policy was last updated on 23 January 2018

  1. Credit

2.1 This document was created using a template from SEQ Legal (http://www.seqlegal.com).

  1. How we use your personal data

3.1 In this Section 3 we have set out:

(a) the general categories of personal data that we may process;

(b) in the case of personal data that we did not obtain directly from you, the source and specific categories of that data;

(c) the purposes for which we may process personal data; and

(d) the legal bases of the processing.

3.2 We may process data about your use of our website and services ("usage data"). The usage data may include your IP address, geographical location, browser type and version, operating system, referral source, length of visit, page views and website navigation paths, as well as information about the timing, frequency and pattern of your service use. The source of the usage data is our analytics tracking system. This usage data may be processed for the purposes of analysing the use of the website and services. The legal basis for this processing is our legitimate interests, namely monitoring and improving our website and services.

3.3 We may process your account data ("account data"). The account data may include your name and email address. The source of the account data is you. The account data may be processed for the purposes of operating our website, providing our services, ensuring the security of our website and services, maintaining back-ups of our databases and communicating with you.  The legal basis for this processing is our legitimate interests, namely the proper administration of our website and business.

3.4 We may process your personal data that are provided in the course of the use of our services ("service data"). The service data may include personal information such names, address and contact details as well as feedback and testimony. The source of the service data is you or your employer. The service data may be processed for the purposes of operating our website, providing our services, ensuring the security of our website and services, maintaining back-ups of our databases, communicating with you and reporting to grant givers. The legal basis for this processing is our legitimate interests, namely the proper administration of our website and business.

3.5 We may process information that you post for publication on our website or through our services ("publication data"). The publication data may be processed for the purposes of enabling such publication and administering our website and services. The legal basis for this processing is our legitimate interests, namely the proper administration of our website and business.

3.6 We may process information contained in any enquiry you submit to us regarding products and/or services ("enquiry data"). The enquiry data may be processed for the purposes of offering, marketing and selling relevant products and/or services to you. The legal basis for this processing is consent.

3.7 We may process information relating to transactions, including donations or purchases of goods and services, that you enter into with us and/or through our website ("transaction data").The transaction data may include your contact details, your card details and the transaction details. The transaction data may be processed for the purpose of supplying the purchased goods and services and keeping proper records of those transactions. The legal basis for this processing is the performance of a contract between you and us and/or taking steps, at your request, to enter into such a contract and our legitimate interests, namely our interest in the proper administration of our website and business.

3.8 We may process information that you provide to us for the purpose of subscribing to our email notifications and/or newsletters ("notification data"). The notification data may be processed for the purposes of sending you the relevant notifications and/or newsletters. The legal basis for this processing is consent.

3.9 We may process information contained in or relating to any communication that you send to us ("correspondence data"). The correspondence data may include the communication content and metadata associated with the communication. The correspondence data may be processed for the purposes of communicating with you and record-keeping. The legal basis for this processing is our legitimate interests, namely the proper administration of our website and business and communications with users.

3.10 We may process your personal information (“personal data”). This data may include names of relatives, their age and relation to you. The source of this data is other people such as friends or family, who may contact us on your behalf. This data may be processed for helping us make sure you receive the appropriate information and services. The legal basis for this processing is our legitimate interests, namely the proper administration of our website and business and communications with users.

3.11 We may process information that you provide to us for the purpose of participating in our DMD Registry ("Registry data"). The Registry data may be processed for the purposes of historical, statistical or research purposes and sending you the relevant notifications relevant research studies and trials. The legal basis for this processing is consent.

3.12 In addition to the specific purposes for which we may process your personal data set out in this Section 3, we may also process any of your personal data where such processing is necessary for compliance with a legal obligation to which we are subject.

  1. Providing your personal data to others

4.1 We may disclose your personal data to our suppliers, third parties or subcontractors insofar as reasonably necessary for organising the delivery of certain services and events or to fulfil other necessary legal obligations.

4.2 Financial transactions relating to our website and services may be handled by our payment services providers, Stripe, GoCardless, Paypal, CAF and Active Network. We will share transaction data with our payment services providers only to the extent necessary for the purposes of processing your payments, refunding such payments and dealing with complaints and queries relating to such payments and refunds. You can find information about the payment services providers' privacy policies and practices at:

https://stripe.com/gb/privacy

https://gocardless.com/legal/privacy/

https://www.paypal.com/ie/webapps/mpp/ua/privacy-full

https://www.cafonline.org/navigation/footer/privacy

http://www.activenetwork.com/information/privacy-policy

4.3 Your data may also be available to our website provider to enable us and them to carry out analysis and research on demographics, interests and behavior of our users and supporters to help us gain a better understanding of them to enable us to improve our services. This may include connecting data we receive from you on the website to data available from other sources. Your personally identifiable data will only be used where it is necessary for the analysis required, and where your interests for privacy are not deemed to outweigh their legitimate interests in developing new services for us. In the case of this activity the follow will apply:

  1. Your data will be made available to our website provider
  2. The data that may be available to them include any of the data we collect as described in section 3 above.
  3. Our website provider will not transfer your data to any other third party, or transfer your data outside of the EEA.
  4. They will store your data for a maximum of 7 years.
  5. This processing does not affect your rights under sections 10 or 16 of this privacy policy

4.4 We may disclose your enquiry data to one or more of those selected third party suppliers of goods and services identified on our website for the purpose of enabling them to contact you so that they can offer, market and sell to you relevant goods and/or services. Each such third party will act as a data controller in relation to the enquiry data that we supply to it; and upon contacting you, each such third party will supply to you a copy of its own privacy policy, which will govern that third party's use of your personal data.

4.5 In addition to the specific disclosures of personal data set out in this Section 4, we may also disclose your personal data where such disclosure is necessary for compliance with a legal obligation to which we are subject, or in order to protect your vital interests or the vital interests of another natural person.

  1. International transfers of your personal data

5.1 In this Section 5, we provide information about the circumstances in which your personal data may be transferred to countries outside the European Economic Area (EEA).

5.2 MailChimp, who we use to administer our mailing list and newsletter is situated in United States of America. The European Commission has made an "adequacy decision" with respect to the data protection laws of each of these countries. Transfers to this country will be protected by appropriate safeguards, namely the use of standard data protection clauses adopted or approved by the European Commission.

5.3 In the event that a research project outside the EEA needs your data from the DMD Registry it will only be transferred when the following conditions are met: The research cannot be done within the DMD Registry database. For example computing the frequency of genetic variants can be done on the Registry database. Any data transferred is anonymous. The Steering Committee (consisting of senior medical professionals) has validated that the research will help achieve the goals of the Registry. In addition, under the Data Protection Act a transfer of data can only be made outside the European Economic Area (EU and Iceland, Liechtenstein and Norway), where there is “adequate protection” for the rights and freedoms of the individuals. Before any decision to transfer data outside the European Union is made Action Duchenne Ltd will take legal advice for the test of adequacy.

5.4 You acknowledge that personal data that you submit for publication through our website or services may be available, via the internet, around the world. We cannot prevent the use (or misuse) of such personal data by others.

  1. Retaining and deleting personal data

6.1 This Section 6 sets out our data retention policies and procedure, which are designed to help ensure that we comply with our legal obligations in relation to the retention and deletion of personal data.

6.2 Personal data that we process for any purpose or purposes shall not be kept for longer than is necessary for that purpose or those purposes.

6.3 We will retain and delete your personal data as follows:

(a) All categories of data will be retained for at least 7 years following your last interaction with us, at the end of which period it will be deleted from our systems. With the exception of:

(b) Notification data; this will be retained until you opt out of further communications

(c) DMD Registry data; this will be kept indefinitely for as long as it serves historical, statistical or research purposes, as long as it is not used in connection with decisions affecting particular individuals, or in a way that is likely to cause damage or distress.

6.4 Notwithstanding the other provisions of this Section 6, we may retain your personal data where such retention is necessary for compliance with a legal obligation to which we are subject, or in order to protect your vital interests or the vital interests of another natural person.

  1. Amendments

7.1 We may update this policy from time to time by publishing a new version on our website.

7.2 You should check this page occasionally to ensure you are happy with any changes to this policy.

7.3 We may notify you of changes to this policy by email.

  1. Your rights

8.1 In this Section 8, we have summarised the rights that you have under data protection law. Some of the rights are complex, and not all of the details have been included in our summaries. Accordingly, you should read the relevant laws and guidance from the regulatory authorities for a full explanation of these rights.

8.2 Your principal rights under data protection law are:

(a) the right to access;

(b) the right to rectification;

(c) the right to erasure;

(d) the right to restrict processing;

(e) the right to object to processing;

(f) the right to data portability;

(g) the right to complain to a supervisory authority; and

(h) the right to withdraw consent.

8.3 You have the right to confirmation as to whether or not we process your personal data and, where we do, access to the personal data, together with certain additional information. That additional information includes details of the purposes of the processing, the categories of personal data concerned and the recipients of the personal data. Providing the rights and freedoms of others are not affected, we will supply to you a copy of your personal data. The first copy will be provided free of charge, but additional copies may be subject to a reasonable fee.

8.4 You have the right to have any inaccurate personal data about you rectified and, taking into account the purposes of the processing, to have any incomplete personal data about you completed.

8.5 In some circumstances you have the right to the erasure of your personal data without undue delay. Those circumstances include: the personal data are no longer necessary in relation to the purposes for which they were collected or otherwise processed; you withdraw consent to consent-based processing; the processing is for direct marketing purposes; and the personal data have been unlawfully processed. However, there are certain general exclusions of the right to erasure. Those general exclusions include where processing is necessary: for exercising the right of freedom of expression and information; for compliance with a legal obligation; or for the establishment, exercise or defence of legal claims.

8.6 In some circumstances you have the right to restrict the processing of your personal data. Those circumstances are: you contest the accuracy of the personal data; processing is unlawful but you oppose erasure; we no longer need the personal data for the purposes of our processing, but you require personal data for the establishment, exercise or defence of legal claims; and you have objected to processing, pending the verification of that objection. Where processing has been restricted on this basis, we may continue to store your personal data. However, we will only otherwise process it: with your consent; for the establishment, exercise or defence of legal claims; for the protection of the rights of another natural or legal person; or for reasons of important public interest.

8.7 You have the right to object to our processing of your personal data on grounds relating to your particular situation, but only to the extent that the legal basis for the processing is that the processing is necessary for: the performance of a task carried out in the public interest or in the exercise of any official authority vested in us; or the purposes of the legitimate interests pursued by us or by a third party. If you make such an objection, we will cease to process the personal information unless we can demonstrate compelling legitimate grounds for the processing which override your interests, rights and freedoms, or the processing is for the establishment, exercise or defence of legal claims.

8.8 To the extent that the legal basis for our processing of your personal data is consent, and such processing is carried out by automated means, you have the right to receive your personal data from us in a structured, commonly used and machine-readable format. However, this right does not apply where it would adversely affect the rights and freedoms of others.

8.9 If you consider that our processing of your personal information infringes data protection laws, you have a legal right to lodge a complaint with a supervisory authority responsible for data protection. You may do so in the EU member state of your habitual residence, your place of work or the place of the alleged infringement.

8.10 To the extent that the legal basis for our processing of your personal information is consent, you have the right to withdraw that consent at any time. Withdrawal will not affect the lawfulness of processing before the withdrawal.

8.11 You may exercise any of your rights in relation to your personal data by written notice to us, in addition to the other methods specified in this Section 8.

  1. Third party websites

9.1 Our website includes hyperlinks to, and details of, third party websites.

9.2 This privacy policy only governs our websites and we are not responsible for the privacy policies that govern third party websites even where we have provided links to them.  If you use any link on our website we recommend you read the privacy policy of that website before sharing any personal or financial data

9.3 We operate a number of social media pages (including Facebook, Twitter, YouTube and Instagram).  Although this policy covers how we will use any data collected from those pages it does not cover how the providers of social media websites will use your information.  Please ensure you read the privacy policy of the social media website before sharing data and make use of the privacy settings and reporting mechanisms to control how your data is used.

  1. Updating information

10.1 Please complete this form if the personal information that we hold about you needs to be corrected or updated.

  1. Acting as a data processor

11.1 In respect of payment data, we do not act as a data controller; instead, we act as a data processor.

11.2 Insofar as we act as a data processor rather than a data controller, this policy shall not apply. Our legal obligations as a data processor are instead set out in the contract between us and the relevant data controller.

  1. About cookies

12.1 A cookie is a file containing an identifier (a string of letters and numbers) that is sent by a web server to a web browser and is stored by the browser. The identifier is then sent back to the server each time the browser requests a page from the server.

12.2 Cookies may be either "persistent" cookies or "session" cookies: a persistent cookie will be stored by a web browser and will remain valid until its set expiry date, unless deleted by the user before the expiry date; a session cookie, on the other hand, will expire at the end of the user session, when the web browser is closed.

12.3 Cookies do not typically contain any information that personally identifies a user, but personal information that we store about you may be linked to the information stored in and obtained from cookies.

  1. Cookies that we use

13.1 We use cookies for the following purposes:

(a) authentication - we use cookies to identify you when you visit our website and as you navigate our website;

(b) status - we use cookies to help us to determine if you are logged into our website;

(c) personalisation - we use cookies to store information about your preferences and to personalise the website for you;

(d) security - we use cookies as an element of the security measures used to protect user accounts, including preventing fraudulent use of login credentials, and to protect our website and services generally;

(e) advertising - we use cookies to help us to display advertisements that will be relevant to you;

(f) analysis - we use cookies to help us to analyse the use and performance of our website and services; and

(g) cookie consent - we use cookies to store your preferences in relation to the use of cookies more generally.

  1. Cookies used by our service providers

14.1 Our service providers use cookies and those cookies may be stored on your computer when you visit our website.

14.2 We use Google Analytics to analyse the use of our website. Google Analytics gathers information about website use by means of cookies. The information gathered relating to our website is used to create reports about the use of our website. Google's privacy policy is available at: https://www.google.com/policies/privacy/. The relevant cookies are:: _ga, _gid, _gat, __utma, __utmt, __utmb, __utmc, __utmz and __utmv.

14.3 We use Active Network to facilitate registrations for our annual international conference. This service uses cookies for authentication . You can view the privacy policy of this service provider at http://www.activenetwork.com/information/privacy-policy.

  1. Managing cookies

15.1 Most browsers allow you to refuse to accept cookies and to delete cookies. The methods for doing so vary from browser to browser, and from version to version. You can however obtain up-to-date information about blocking and deleting cookies via these links:

(a) https://support.google.com/chrome/answer/95647?hl=en (Chrome);

(b) https://support.mozilla.org/en-US/kb/enable-and-disable-cookies-website-preferences (Firefox);

(c) http://www.opera.com/help/tutorials/security/cookies/ (Opera);

(d) https://support.microsoft.com/en-gb/help/17442/windows-internet-explorer-delete-manage-cookies (Internet Explorer);

(e) https://support.apple.com/kb/PH21411 (Safari); and

(f) https://privacy.microsoft.com/en-us/windows-10-microsoft-edge-and-privacy (Edge).

15.2 Blocking all cookies will have a negative impact upon the usability of many websites.

  1. Our details

16.1 This website is owned and operated by Action Duchenne Ltd.

16.2 We are a registered charity in England and Wales under registration number 1101971, and in Scotland under number SCO43852, and our registered office is at Action Duchenne, Epicentre, 41 West Street, London E11 4LJ.

16.3 You can contact us:

(a) by post, using the postal address given above;

(b) using our website contact form;

(c) by telephone, on 020 8556 9955 from time to time; or

(d) by email, using [email protected] from time to time.

  1. Data protection officer

17.1 Our data protection officer's contact details are: Angela Stringer, Action Duchenne, Epicentre, 41 West Street, London E11 4LJ or [email protected]

  1. Data protection registration

18.1 We are registered as a data controller with the UK Information Commissioner's Office.

18.2 Our data protection registration number is Z9184356.

  1. Complaints

19.1 If you have a complaint about us, or the treatment of your data, you can contact the Charity Commission. The Charity Commission is the independent watchdog for charities.  You can make a complaint about a charity on their website at www.charity-commission.gov.uk.

19.2 If you've got a complaint about our fundraising activities you can also complain to the Fundraising Standards Board (FRSB).  To find out whether a charity is an FRSB member and how to go about making a complaint, go to the FSRB public website at www.givewithconfidence.org.uk