Privacy Policy

 

We are committed to safeguarding the privacy of our website visitors, and this page sets out how we will treat your personal information:

1) What Information do we collect?
We may collect, store and use the following kinds of personal information:
(a) information about your computer and about your visits to and use of this website including your IP address, geographical location, browser type and version, operating system, referral source, the length of visit, page views, and website navigation.
(b) Information relating to any transactions carried out between you or us on or in relation to this website, including information relating to any purchases you make of our goods or services including credit and debit card details.
(c) Information that you provide to us for the purpose of registering with us including your name,
e-mail address and postal address and contact telephone numbers.
(d) Information that you provide to us for the purpose of subscribing to our website services,
e-mail notifications and/or newsletters
(e) Any other information that you choose to send to us.

2) Using your personal information
Personal information submitted to us via this website will be used for the purposes specified in this privacy policy or in relevant parts of the website.
We may use your personal information to:
(a) Administer the website:
(b) Improve your browsing experience by personalising the website:
(c) Enable your use of the services available on the website:
(d) Send you general commercial communications:
(e) Send you e-mail notifications which you have specifically requested:
(f) Send to you marketing communications relating to our business or the businesses of carefully-selected third parties which we think may be of interest to you by post or where you have specifically agreed to this, by e-mail or similar technology. You can inform us at any time if you no longer require marketing communications.
(g) Provide third parties with statistical information about our users – but this information will not be used to identify any individual user:
(h) Deal with inquiries and complaints made by or about you relating to the website.
We will not without your expressed consent provide your personal information to any third parties for the purpose of direct marketing.

3) Disclosures
We may disclose information about you to any of our employees, officers, agents, suppliers or subcontractors insofar as reasonably necessary for the purposes as set out in this privacy policy.
In addition, we may disclose your personal information:
(a) To the extent that we are required to do so by law
(b) In connection with any legal proceedings or any prospective legal proceedings
(c) In order to establish, exercise or defend our legal rights (including providing information to others for the purposes of fraud prevention and reducing credit risk)
(d) To the purchaser (or prospective purchaser) of any business or asset which we are (or are contemplating) selling: and
(e) To any person who we reasonably believe may apply to a court or other competent authority for disclosure of that personal information where, in our reasonable opinion, such court or authority would be reasonably likely to order disclosure of that personal information.
Except as provided in the privacy policy, we will not provide your information to third parties.

4) International Data Transfers
Information that we collect maybe stored and processed in and transferred between any of the countries in which we operate in order to enable us to use the information in accordance with this privacy policy.

5) Security of Your Personal Information
We will take reasonable technical and organisational precautions to prevent a loss, misuse or alteration of your personal information.
We will store all the personal information you provide on our secure password and firewall protected servers. All sensitive electronic transactions you make to or receive from us will be encrypted using SSL technology.
Of course, data transmission over the internet is inherently insecure, and we cannot guarantee the security of data sent over the internet.

6) Policy Amendments
We may update this privacy policy from time to time by posting a new version on our website. You should check this page occasionally to ensure you are happy with any changes.
We may also notify you of changes to our privacy policy by e-mail.

7) Your Rights
You may instruct us to provide you with any personal information we hold about you. Provision of such information will be subject to the supply of appropriate evidence of your identity. For this purpose, we will usually accept a photocopy of your passport certified by a solicitor or bank plus an original copy of a utility bill showing your current address.
We may withhold such personal information to the extent permitted by law.
You may instruct us not to process your personal information for marketing purposes by e-mail at any time. In practice, you will usually either expressly agree in advance to our use of your personal information for marketing purposes or we will provide you with an opportunity to opt out of the use of your personal information for marketing purposes.

8) Third Party Web Sites
The website contains links to other websites. We are not responsible for the privacy policies or practices of third party websites.

9) Updating Information
Please let us know if the personal information which we hold about you needs to be corrected or updated.
 

 
 

Welcome To DevelopAKUre


DevelopAKUre is a series of major international clinical trials, run by a consortium of 12 European partners. It aims to study a potential new drug, called nitisinone, and assess its potential effectiveness in treating the rare disease, alkaptonuria (AKU).

DevelopAKUre is co-funded by a grant from the European Commission. This website is run by a UK patient group, the AKU Society. Learn more about AKU on the AKU Society's What is AKU page.

 

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