Alexion Pharmaceuticals Inc is part of a global group of AstraZeneca companies. This Privacy Policy applies to Alexion Pharmaceuticals Inc and its affiliates in respect of its processing of personal information in connection with its activities on dedicated pages. For information about AstraZeneca’s global privacy standards and practices, you may read the AstraZeneca global privacy notice here.

The “LAL-D Your Way” patient website (hereinafter referred to as the “website”) is provided as a source for general disease education and to support the lysosomal acid lipase deficiency (LAL-D) patient community. The website is financed by the Alexion Pharmaceuticals, Giesshübelstrasse 30, 8045 Zürich, Switzerland (“Alexion”); and is provided by Partizan Health Ltd. (“Partizan Health”), 31 Charlotte Road, London, EC2A 3PB, United Kingdom. The website is intended to support and guide patients who have been diagnosed with LAL-D.

Purpose of the website
  • General information about LAL-D disease.
  • Information about LAL-D dietary management (including recipes).
  • Information to the users of the website
1. Is any personal data collected either by Alexion or by Partizan Health? 

There is no personal data transmitted by the website to either Alexion or Partizan Health. The only instance when personal data may be collected is when the user sends personal data directly to Partizan or Alexion, which we encourage users not to do.

2. Legal basis for processing your personal data 

  • For the instances when you send personal data directly to Alexion or Partizan Health in form of an inquiry or contact form, we collect and process your personal data according to GDPR Article 6(1)(b) for the performance of a contract to which the data subject is party or for pre entering such contract necessary to address and answer your request or inquiry;
  • For the instance when we use third party analytical cookies such as Goggle Analytics, we rely on your consent as per GDPR Article 6(1)(a) – data subject gave their consent. Your consent is captured via the cookies consent banner available on this site only when you accept such cookies.
  • When we use our first party sessional and functional cookies to memorize your browser settings, language and region including time zone, we rely on GDPR Article 6(1)(f) our legitimate interest to provide you with a pleasant and consistent user experience. These cookies do not use personal information but only aggregated and anonymous user information.
3. How is your personal data used and passed on? 

Partizan Health was commissioned by Alexion as a service provider to host and manage the website in order to provide technical and administrative support.

We collect anonymous statistical information (non-user specific information) about your use of this website through cookies and similar technology. Cookies are small text files that are placed on your computer or other web-accessing device by this website that allow us to recognise you and maintain your preferences when you return to our website.

We use cookies on this website to:

  • direct users to the correct language on the website;
  • make sure the website has a consistent look across different browsers and devices;
  • track aggregated statistics about visits to the website to help us improve website performance.

These are the specific cookies we use on this website, with information on how they function:

Cookie key Description
AlertBoxClosed This cookie is set by websites using certain versions of the cookie law compliance solution from OneTrust. It is set after visitors have seen a cookie information notice and in some cases only when they actively close the notice down.
ajs_anonymous_id To store last visit. The purpose is statistics.
OptanonConsent To store cookie consent preferences. The purpose is functional.
bvfw-bypass-cookie Used for backup of WordPress and as part of website security.
pll_language Detects browser language in order to set this as the default language.
_ga_HRJ8MX5QYG The functionality is to store and count pageviews. The purpose is statistics
_ga The functionality is to store and count pageviews. The purpose is statistics
_ga_DD7FLCXCMF The functionality is to store and count pageviews. The purpose is statistics
OptanonConsent To store cookie consent preferences. The purpose is functional.
wordpress_test_cookie The functionality is to read if cookies can be placed. The purpose is functional.
OptanonAlertBoxClo It enables the website not to show the message more than once to a user. The cookie has a one year lifespan and contains no personal information.

The website also uses third-party analytics services (such as Google Analytics) to provide anonymous statistical data (non-user specific information) about your use of the website, for example, knowing which webpage referred you to the website, understanding which pages you visited or usage trends, and providing certain features to you. To learn more about Google’s privacy practices, please review the Google Privacy Policy. To prevent Google Analytics from using your information for analytics, you can install the Google Analytics Opt-Out Browser Add-on here.

4. Security controls and protection of your personal data  

All personal data will never be shared outside the website, which remain protected and are only available to the user. This personal data cannot be viewed by any other user or medical professional unless the user wishes to share this data with these people. This personal data is not shared with Alexion or Partizan Health.

The website has state of the art security measures to protect visitors and users.

5. Data transfers 

There is no intention or set up for Alexion or Partizan Health to collect or transfer any personal data from you. Unless you send such personal data (i.e. inquires, contact form, etc) directly to Alexion or Partizan Health. Alexion, being a global Pharmaceutical company has servers located outside of the European Union. When transferring personal data to jurisdictions that do not provide the same level of data protection as your home country, we use the European Commission standard contractual clauses as a safeguard mechanisms required by GDPR article 46.

6. Data subjects’ rights 

In case you voluntarily send personal data to Alexion, or your personal data is collected by Alexion for troubleshooting or technical purposes for the use of this website, you have the right to request access or information on your personal data collected and used by Alexion, request blocking, deletion or opposition to the use of your personal data. You also have the right to request a set of your personal data on a machine-readable format. Alexion does not use your personal data for profiling or decision making. You can exercise your rights by using the Contact details section below.

7. Contact details 

As mentioned above, despite no personal data being passed on to Alexion, or Partizan Health which would allow conclusions to be drawn about your person. Alexion as the owner of the website even though Alexion has no access to any personal data, is the data controller. For this reason, if you have general questions, you can reach:

Partizan Health at: 31 Charlotte Road, London, EC2A 3PB United Kingdom

Alexion and AstraZeneca have assigned a data protection officer responsible for overseeing compliance with EU and UK data protection laws, which you may contact at [email protected][email protected] or by mail at the Global Data Protection Officer, Astra Zeneca Middlewood Court, Silk Road, Macclesfield, Cheshire SK10 2NA, in case of any questions or concerns regarding the processing of your Personal Data.

You always have the right to submit inquires or lodge complaints with your local data protection supervisory authority.

We may change this Privacy Notice from time to time, therefore we ask that you check back occasionally to ensure that you are aware of the most recent version.

– Last updated: August 2022