Driving research, providing support and improving outcomes for rare disease patients and their families

Privacy Policy 

1. Introduction

1.1    We are committed to safeguarding the privacy of our website visitors.

1.2    This policy applies where we are acting as a data controller with respect to the personal data of such persons; in other words, where we determine the purposes and means of the processing of that personal data.

1.3    In this policy, “we”, “us” and “our” refer to the Myrovlytis Trust.

2. Credit

2.1    This document was created using a template from Docular (https://seqlegal.com/free-legal-documents/privacy-policy).

3. The personal data that we collect

3.1    In this Section 3 we have set out the general categories of personal data that we process and, in the case of personal data that we did not obtain directly from you, information about the source and specific categories of that data.

4. Purposes of processing and legal bases

4.1    In this Section 4, we have set out the purposes for which we may process personal data and the legal bases of the processing.

4.2    Direct marketing – We may process contact data for the purposes of creating, targeting and sending direct marketing communications by email, post and making contact by telephone. The legal basis for this processing is our legitimate interests, namely promoting our charity and communicating marketing messages, grant management and conference coordination.

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5. Providing your personal data to others

5.1    Your personal data held in our website database will be stored on the servers of our hosting services providers.

5.2    In addition to the specific disclosures of personal data set out in this Section 5, we may 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. We may also disclose your personal data where such disclosure is necessary for the establishment, exercise, or defence of legal claims, whether in court proceedings or in an administrative or out-of-court procedure.

 

6. Retaining and deleting personal data

6.1    This Section 7 sets out our data retention policies and procedures, 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 your personal data as follows:

 (a)    Contact data will be retained for a minimum period of 1 year following the date of the most recent contact  between you and us, and for a maximum period of 5 years following that date;

 (b)    Communication data will be retained for a minimum period of 1 year following the date of the communication in question, and for a maximum period of 5 years following that date;

6.4    Notwithstanding the other provisions of this Section 7, 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.

6. Your rights

 7.1    In this Section 8, we have listed the rights that you have under data protection law.

7.2    Your principal rights under data protection law are:

 (a)    the right to access – you can ask for copies of your personal data;

 (b)    the right to rectification – you can ask us to rectify inaccurate personal data and to complete incomplete personal data;

 (c)    the right to erasure – you can ask us to erase your personal data;

 (d)    the right to restrict processing – you can ask us to restrict the processing of your personal data;

 (e)    the right to object to processing – you can object to the processing of your personal data;

 (f)     the right to data portability – you can ask that we transfer your personal data to another organisation or  to  you;

 (g)    the right to complain to a supervisory authority – you can complain about our processing of your                                                                personal data; and

 (h)    the right to withdraw consent – to the extent that the legal basis of our processing of your personal data is                                                  consent, you can withdraw that consent.

7.3    These rights are subject to certain limitations and exceptions. You can learn more about the rights of data subjects by visiting https://edpb.europa.eu/our-work-tools/general-guidance/gdpr-guidelines-recommendations-best-practices_en and https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/individual-rights/.

7.4    You may exercise any of your rights in relation to your personal data by written notice to us at contact@myrovlytistrust.org.

8. About cookies

8.1    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.

8.2    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.

9. Cookies that we use 

9.1    We use cookies for the following purposes:

(a)    Authentication and status – we use cookies to identify you when you visit our website and as you navigate our website.

(d)    Security – we use cookies to protect our website and services generally.

 

10. Cookies used by our service providers

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

10.2  We use Google Analytics. Google Analytics gathers information about the use of our website by means of cookies. The information gathered is used to create reports about the use of our website. You can find out more about Google’s use of information by visiting https://www.google.com/policies/privacy/partners/ and you can review Google’s privacy policy at https://policies.google.com/privacy.

11. Managing cookies

11.1  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 (Chrome);

(b)    https://support.mozilla.org/en-US/kb/enhanced-tracking-protection-firefox-desktop (Firefox);

(c)    https://help.opera.com/en/latest/security-and-privacy/ (Opera);

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

(e)    https://support.apple.com/en-gb/guide/safari/manage-cookies-and-website-data-sfri11471/mac (Safari); and

(f)     https://support.microsoft.com/en-gb/help/4468242/microsoft-edge-browsing-data-and-privacy (Edge).

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

11.3  If you block cookies, you will not be able to use all the features on our website.

12. Amendments

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

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

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

13. Our Details

13.1  This website is owned and operated by the Myrovlytis Trust.

13.2  We are registered under UK Charity Commission registration number 1122073 and our registered office is at 26 Cadogan Square, London, SW1X OJP, UK.

13.3  Our principal place of business is at 26 Cadogan Square, London, SW1X OJP, UK.

13.4  You can contact us:

(a)    By post, to the postal address given above;

(b)    using our website contact form;

(c)    by telephone, on the contact number published on our website; or

(d)    by email, using the email address published on our website.

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