Terms and Conditions

Alexion Pharma GmbH (“Alexion” or “we”) provides this website as a source of general information and education about Alexion and rare diseases, like aHUS (atypical haemolytic uremic syndrome), HPP (hypophosphatasia), LAL-D (lysosomal acid lipase deficiency) and PNH (paroxysmal nocturnal haemoglobinuria) for registered healthcare professionals only. 

This page describes the terms and conditions (hereinafter “Terms”) that apply to any user visiting www.rarediseasewebinars.eu (hereinafter “the Site”). This website may be linked to other websites and applications for mobile devices (“Applications”) provided by Alexion, which together with this website shall be referred to in this statement as the “Site”. 

By using the Site, you acknowledge that you have read and understood the terms and that you accept them without limitation. If you do not agree to these Terms, please do not use the Site. As the “Terms” may be amended at any time without prior notice to you, we advise you to consult them regularly. 

Please read this legal statement carefully before using the Site. This statement includes

(“Terms of Use”, “Data Privacy Statement” and “Cookie and Site Usage Tracking Policy” collectively referred to as the “Terms”)

Terms of Use

Scope of the Site

The Site is intended to provide general information on rare diseases, like aHUS (atypical haemolytic uremic syndrome), HPP (hypophosphatasia), LAL-D (lysosomal acid lipase deficiency) and PNH (paroxysmal nocturnal haemoglobinuria) for educational purposes only. You should not construe anything on this Site as a promotion or advertisement for any product or for the use of any product that is not authorized by the laws and regulations of your country of residence. Nothing on this Site is intended to substitute your own medical advice and/or judgement. The Site does not constitute business, medical or other professional advice; it is intended as a non-promotional, medical educational resource and is a virtual education and information platform for healthcare professionals only. 

The Site allows healthcare professionals to virtually attend live webinars by registering online and view previously broadcasted webinars on-demand if applicable.

The information contained on the Site is intended for educational, informational, non-commercial and personal use for licensed healthcare professionals only. By accessing and using the Site you are confirming that you are a healthcare professional. If you are not a qualified healthcare professional, you must not access or use this Site. 

The Site offers presentations and opinions by experts consulted in a particular field in relation to the content of the Site or excerpts from press articles. Experts’ opinions reflect their own personal views and should never be interpreted as being the opinion or responsibility of Alexion and/or its affiliates.

Alexion has made reasonable efforts to ensure that information is complete and accurate when posted. However, Alexion makes no warranties or representations as to the completeness or accuracy of the information presented.

Nothing on this Site constitutes an invitation or shall be considered as an encouragement to invest. It should not under any circumstances be interpreted as prospecting or as a public offering, nor is it an offer to subscribe, buy or swap shares or other securities in Alexion and/or its subsidiaries concerned.

Use of the Site

You may use the Site for lawful purposes only. Alexion specifically prohibits the use of the Site for, and you agree not to: (i) use any device, software or routine to interfere or attempt to interfere with the proper working of the Site; (ii) take any action that imposes an unreasonably large load on the Site’s infrastructure; and (iii) decipher, decompile, disassemble, or reverse engineer any of the software comprising or in any way making up any part of the Site, or attempt to do the same.

Information included and published on the Site may include direct or indirect references to products, programs and services of Alexion that are not announced or available in some countries or some regions or that may be supplied under a different name and may be subject to regulations and terms of use that differ depending on the country. Such references do not mean that Alexion intends to sell those products, programs or services in your country. Please contact Alexion for any information about the products, programs and services available to you.

Your access to this Site and/or content may be limited in duration in order to comply with local regulations in your jurisdiction. Alexion reserves the right to cease access to the content at any time without prior notice.

Restrictions on Use of Materials and Intellectual Property

The Site is owned, maintained and operated by Alexion. The contents of the Site, such as text, graphics, images, logos, button icons, software and other material (the “Material”) are protected under copyright, trademark and other laws. You may not copy, reproduce, republish, modify, upload, post, transmit, or distribute Material in any way. For purposes of these Terms, the use of the Material or a modification of the Material on any other Site or networked computer environment is prohibited unless permission is obtained in writing from Alexion. You may not copy or adapt any Material we use to generate the web pages. This is also protected by copyright and other laws.

The following statement should appear on any authorized copy of all or part of the content of the Site: “COPYRIGHT 2016 – ALEXION PHARMA GMBH – ALL RIGHTS RESERVED.”.

Links to Third Party Websites

Links to other websites not controlled by Alexion (non-Alexion) are provided for convenience only. By providing these links, we are not endorsing or agreeing with content contained at any of the linked sites. Furthermore, the content of the linked websites is not part of the Site. The use of third-party sites is at your own risk and subject to the terms and conditions of the third-party site. 

Neither Alexion nor any other party involved in creating, producing, or delivering the Site or any linked non-Alexion site from or to this Site shall be liable in any manner whatsoever for any damages of any nature arising out of your access to this Site or any linked non-Alexion site from this Site, or any errors or omissions in their content. In addition, you are responsible for taking the precautions necessary to prevent any infection, in particular by one or more computer viruses, Trojan horses or any other “virus”.

We also want you to know that when you link from an Alexion website to another website, the website may have the ability to recognize that you have come from the Site. If you do not want any other websites and/or provider to know that you have been on this Site, we recommend that you do not use the links provided in our Site. 


Alexion appreciates hearing from interested parties and welcomes your comments regarding Alexion’s products or technologies, including Alexion’s on-line services. However, Alexion’s company policy does not allow it to accept or consider confidential creative ideas, suggestions, inventions, note drawings, concepts, materials or other information (collectively “Information”) other than those it has specifically requested in writing. If you nonetheless send us any Information,  becomes Alexion’s property and none of the Information shall be subject to any obligation of confidence on the part of Alexion and Alexion shall not be liable for any use or disclosure of any Information. Without limitation of the foregoing, Alexion shall exclusively own all now known or hereafter existing rights to the Information and shall be entitled to unrestricted use of the Information for any purpose whatsoever, commercial or otherwise, without compensation to the provider of the Information.

Limitation on Liability

Alexion makes no warranties or representations as to its accuracy. The materials in this Site are provided “as is” and without warranties of any kind either expressed or implied. To the fullest extent permissible pursuant to applicable law, Alexion disclaims all explicit or implicit warranties, including but not limited to implied warranties of merchantability and suitability for a particular purpose of the Site. 

Consequently, except for direct damages resulting from gross negligence or willful misconduct, Alexion assumes no liability or responsibility for any direct, indirect, special, incidental or consequential damages under any legal theory arising out of or in connection with this Site; for any inaccuracy, errors or omissions in the content of Site; for any damage resulting from fraudulent intrusion by a third party resulting in an alteration of information or items made available on the Site or for the ability or inability to use the Site or the information contained herein. Furthermore, Alexion does not warrant that the functions contained in the materials will be uninterrupted or error free; that defects will be corrected or that this Site or the server that makes it available are free of viruses or other harmful components.

Availability of the Site

You acknowledge that (i) it is technically impossible to provide the Site free from any defect and that Alexion cannot undertake to do so; (ii) defects may lead to the Site being temporarily unavailable; and (iii) operation of the Site can be affected by events and/or matters that Alexion does not control. Alexion may, at any time, alter or interrupt, temporarily or permanently, all or part of the Site to undertake maintenance and/or make improvements and/or changes to the Site. Alexion is not responsible for any alteration, suspension or interruption of the Site.

Trademark and Copyright Information

You should assume that everything you see or read on this Site is copyrighted unless otherwise noted and may not be used without permission of Alexion. 

ALEXION, the ALEXION logo, DEDICATED TO RARE DISEASES, whether or not appearing in bold typeface or with the trademark symbol ®, are trademarks of Alexion Pharmaceuticals, Inc.  Alexion’s trademarks are registered in the European Union, the United States, and in other countries worldwide and may not be used without permission. Use, reproduction, copying, or redistribution of these trademarks is prohibited.

Service Provided by Health Corporate & Healthcare Agency SARL

Alexion has contracted the third party vendor Health Corporate & Healthcare Agency SARL to develop and maintain the website, monitor data, collect forms and provide Alexion with monthly reporting.

Legal Provisions

The Site and its content are governed by and interpreted in accordance with the Laws of Switzerland, any dispute relating thereto are subject to the jurisdiction of the courts of Zurich. Alexion reserves the right to limit provision of any product or service to any person, geographic region or jurisdiction and to limit the products or services that we provide.


If any of these Terms are held invalid or unenforceable by any court of competent jurisdiction, the other provisions of these Terms shall remain in full force and effect. If any provision of these Terms are held invalid or unenforceable only in part or degree, the remainder will continue in full force and effect to the extent not held invalid or unenforceable.

How to contact Alexion

If you have any questions about the Terms of the Site, you may contact us as follows:

Alexion Pharma GmbH
Giesshübelstrasse 30

Data Privacy Statement

Alexion as data controller understands that various laws and regulations govern data protection and we respect your privacy and personal information. Please review this Data Privacy Statement to learn about how Alexion collects, uses, shares and protects information. 

Personal information” is information relating to an identified or identifiable natural person; an identifiable person is one who can be identified, directly or indirectly, by using a combination of information such as identification number or other information which is submitted to and/or collected by the Site and maintained by or for Alexion in an accessible form. Examples of Personal Information that directly identify you can include your name, address, telephone number, email address and other similar information.

Registration – Information Collected – Information You Give Us

The use of the Site is only possible, if you are a healthcare professional and have registered on the Site. If you are not a healthcare professional, you cannot use and register on the Site. Your consent is voluntary. If you do not wish to provide your consent, it will not have any disadvantages for you. However, you may not be able to use this Site.

In order to use the Site, you will be required to register by submitting the following information – Email address, First Name, Last Name, Profession, Country – (hereinafter “Information”) and a password chosen by you (“Registration”), which enables you to log in to this Site and view certain content. By registering with the Site and webinars, the Site will create a profile that includes your Information defined above (hereinafter “Profile”). By providing the Information defined above, you give your consent to these being stored or processed by Alexion so you can register for the use of the Site and webinars. Alexion reserves the right to refuse or cancel any Registration in its sole discretion at any time. You are solely responsible for any activity occurring under your Profile. You must treat your Registration details as confidential and must not disclose them to any third party. You shall never allow any third party to use your Registration. You should immediately notify Alexion in writing of any unauthorized use of your Registration.

The Site collects your personal information when registering for the use of the Site only. We use such information only for purposes which you have approved. You will also have the choice to provide your consent for the following services, if you agree:

  • Your Information can be used for the following purposes: Invitation to scientific webinars, information about scientific events and/or other scientific information about rare diseases. If you provide your consent, your Information will be stored within the database of the software Automation (hosted by SwissCenter, av.Gratta-Praille 2, 1018 Lausanne, Switzerland) and will be extracted by Alexion and used within Alexion databases.
  • Your Information can be used to be contacted by Alexion in person and/or via email after the webinar so Alexion can send you invitation for upcoming webinar or on-demand video link.

If you do not wish that your Information is used for the purposes listed above, please do not provide your consent.

Your consent

When providing Personal Data, signing and accepting the terms herein, you explicitly consent that your Personal Data can be collected, stored, integrated, aggregated, recorded, transferred, adjusted (updated, modified), retrieved, used, depersonalized, blocked, deleted and destroyed, and processed by Alexion on the terms provided herein. If you do not consent to the collection, use, processing, transfer or disclosure of your personal data as outlined herein, please do not register for using the Site.

By providing personal information to us, including, technical inquiries, you give your consent to these being processed by Alexion and contracted service providers for the purpose of registering you for the use of the Site, granting you access to the Site or some other aspects defined on the Site or requested by you.While we retain the right to share your personal information with our corporate affiliates, including affiliates outside the European Union, and with outside companies or agents working on our behalf to help fulfill our business obligations, we do not share any of your personal information with third parties for their own use unless you explicitly give us permission to do so. If you submit Personal Information we may use that information to contact you by email, phone or mail as you indicated to provide you with information you have requested. 

In some cases, we remove personal identifiers from data and maintain it in aggregate form. We may combine this data with other information to produce anonymous, aggregated statistical information helpful to us in improving our products and services.

Data Sharing and Transfer

In case you share personal information with Alexion, Alexion will not disclose to third parties your personal information except (i) to affiliated Alexion entities; (ii) to vendors and service providers who assist Alexion in providing service to you (e.g. a fulfillment company for processing and mailing purposes, providing customer service, sending marketing communications about our products, services and offers, and doing technological maintenance) and complies with the applicable data privacy laws and regulations. We may also disclose personal information for these purposes:

  1. in connection with the sale, assignment or other transfer of the business of the Site to which the data relates;
  2. to respond to requests of government or law enforcement agencies or where required or permitted by applicable laws, court orders, or  government regulations; or
  3. when needed for corporate audits or to investigate or respond to a complaint or security threat.

Any affiliated entity, vendor or service provider, or other third party who has permitted access to or to whom we transfer personal information is required to keep your personal data confidential and comply with applicable data privacy laws.

No Third-Party Direct Marketing Use: Alexion will not sell or otherwise transfer the personal information you provide to us at our Site to any third party for their own direct marketing use unless we provide clear notice to you and obtain your explicit consent for your data to be shared in this manner.

Privacy Statement for Minors

Our Site is not intended or designed for persons under the age of 18 (hereinafter “minor”). We will not knowingly collect, use or disclose personal information from minors without the prior written consent from his/her parents and/or legal guardian.

Website Hosting

The Site is hosted by Alexion Pharma International, 100 College Street, New Haven in USA. 

Third Party Services Provided by Health Corporate & Healthcare Agency SARL

Alexion is using the third party vendor Health Corporate & Healthcare Agency SARL, 15 Grand-Rue, 1260 Nyon (hereinafter “Health Agency”) to collect information (such as “Profile” and participation/registration to a live webinar, watching an on-demand webinar, emails opening rate), build user segments and send appropriate emails depending on the user activity, via a Marketing Automation Software, called Automation. Data are hosted by SwissCenter, Av. Gratta-Paille 2, Lausanne in Switzerland. Alexion assumes no liability on how Health Agency processes your data and Information.

Health Agency is an independent healthcare marketing and communications agency specialised in digital healthcare.

Additional Information on Websites

If parts of the Site have particular provisions relating to privacy that differ from those stated here, those provisions will be disclosed to you on the page on which your personal information is collected.

Retention, Right to Withdraw

Alexion retains your Personal Data for the duration of our relationship with you, unless a longer period is required to comply with applicable laws. In accordance with the applicable EU data privacy laws and regulations, you have the right to withdraw your consent at any time, to access, to modify, to rectify and where applicable to suppress any personal information concerning you, simply by requesting it through the following ways:

By email: dataqueries@alxn.com

By post:
Alexion Pharma GmbH
Legal Department
Giesshübelstrasse 30

In case of withdrawal, your Personal Data will be deleted from Alexion and Alexion will ensure that this Personal Data is deleted from its associated service providers, unless the Personal Data cannot be deleted as it may be required by applicable laws and regulations.

You also have the right to lodge a complaint with a supervisory authority in your country of residence.

Cookie and Site usage tracking policy

This Site uses cookies helping us to deliver our services. By using our services, you agree to our Cookie and Site Usage Tracking Policy.

Automatically Collected Information

We may automatically collect certain types of information that is not personal or linked to any personal information whenever you interact with us on the Site. Examples of such information are: IP address, geographical location, browser type, device type, operating system, etc. We may use this information to improve the quality of the Site and it is only used in an aggregated form. This depersonalized, aggregated information collected from our Site help us to understand trends and your needs.

Automatic technologies we use may include, for example, web server logs and IP addresses, cookies and web beacons. We may also use tracking technologies and third-party analysis services to understand site-usage patterns.

Web Server Logs and IP Addresses: An IP address is a number assigned to your computer whenever you access the Internet that allows computers and servers to recognize and communicate with each other. Alexion may collect IP addresses to conduct system administration and report aggregate information to affiliates, business partners, service providers and/or vendors to conduct website and application analysis and performance reviews.

Web Beacons: A web beacon is an unobtrusive web object (image, code) placed on the website pages to verify whether the visitor has accessed the site and also to collect some basic information such as IP address.

Cookies: A cookie is a piece of information that is placed on your computer when you access certain websites and applications. The cookie uniquely identifies your browser to the server. Cookies allow us to store information on the server to help make your web experience better and to conduct website and application analysis and performance reviews. Most web browsers are set up to accept cookies, although you can reset your browser to refuse all cookies or to indicate when a cookie is being sent. Note, however, that some portions of our Site may not work properly if you refuse cookies.

Our site may use Session and\or Persistent cookies:

Session cookies: Session Cookies are stored only temporarily during a browsing session and are deleted from the user’s device when the browser is closed.

Persistent cookies: This type of cookie is saved on your computer for a fixed period (usually a year or longer) and is not deleted when the browser is closed. Persistent cookies are used where we need to know who you are for more than one browsing session. For example, we use this type of cookie to store your preferences, so that they are remembered for the next visit.

Google Analytics: This Site may use a web analytics service from time to time made available by Google, Inc. (“Google”) called Google Analytics. This service uses cookies to provide information on how users use the Site. The information generated by this service will be transmitted to and stored by Google on servers in the United States. Google will use this information for the purpose of evaluating your use of the Site as well as generating reports on Site activity and other services relating to activity and usage of the Site. By using this Site, you consent to the processing of data about you by Google in the manner and for the purposes set out above. Although the data is stored and analyzed by Google tools, it can be accessed only by Alexion or its third-party vendors through secure logins for Site usage analysis. You may refuse the use of this web analytics service by selecting the appropriate settings on your browser. To refuse the use of Google Analytics, please use the following link: Google Analytics opt-out Browser Add-On.

Your Choices

If you wish to prevent cookies from being used and tracking technology from tracking you as you navigate our Site, you can reset your browser to refuse all cookies and/or tracking technology or to indicate when a cookie is being sent. To learn more about how to do this, visit the help pages of your browser.  You can delete all cookies that are already on your computer and you can set most browsers to prevent them from being placed. If you do this, however, you may have to manually adjust some preferences every time you visit a site and some services and functionalities may not work. To find out more about cookies, including how to see what cookies have been set and how to manage and delete them, visit www.allaboutcookies.org.

Last updated on: April 2017.

© 2017 Alexion Pharma GmbH