Familial chylomicronemia syndrome: privacy policy and terms of use
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Website privacy policy & terms of use

Privacy Policy

Effective Date: March, 2016

Akcea Therapeutics, a subsidiary of Ionis Pharmaceuticals (“Akcea”), respects the privacy of visitors to its websites and online services and values the confidence of its customers, partners, patients, and employees.

This Privacy Policy and Notice of Information Practices (“Privacy Notice”) sets forth Akcea’s practices regarding the collection, use, and disclosure of information that you may provide through the websites and online services that we operate and that link to this Privacy Notice (collectively, the “Services”). This Privacy Notice applies only to the Services and does not apply to information that we collect offline.  Please read the entire Privacy Notice before using our Services.  By using the Services, you agree to abide by the terms of this Privacy Notice.

Collection of Information

We may ask you for some or all of the following types of information when you register with our Services, access various content or features, submit photos and other content, or directly contact us with questions or feedback:

  • Contact information, such as name, e-mail address, postal address, and telephone number;
  • User name and password;
  • Demographic information, such as age, information, and gender;
  • Communications preferences;
  • Search queries;
  • Stories, comments, photos, and other information posted in our interactive online features; and
  • Correspondence and other information that you send to us
  • We also may collect certain information automatically when you visit the Services, including:
  • Your browser type and operating system;
  • Your Internet Protocol (IP) address, which is the number automatically assigned to your computer whenever you access the Internet and that can sometimes be used to derive your general geographic area;
  • Other unique identifiers, including mobile device identification numbers;
  • Sites you visited before and after visiting the Services;
  • Pages you view and links you click on within the Services;
  • Information collected through cookies, web beacons, and other technologies;
  • Information about your interactions with e-mail messages, such as the links clicked on and whether the messages were opened or forwarded; and
  • Standard server log information.

We may use cookies, pixel tags, and similar technologies to automatically collect this information.  Cookies are small bits of information that are stored by your computer’s web browser.  Pixel tags are very small images or small pieces of data embedded in images, also known as “web beacons” or “clear GIFs,” that can recognize cookies, the time and date a page is viewed, a description of the page where the pixel tag is placed, and similar information from your computer or device.  By using the Services, you consent to our use of cookies and similar technologies.  You can decide if and how your computer will accept a cookie by configuring your preferences or options in your browser. However, if you choose to reject cookies, you may not be able to use certain online products, services or features of the Services.

Use of Information

We may use information that we collect through the Services for a variety of purposes, including to:

  • Provide you with the products, promotions, services, and information you request;
  • Contact you via email and otherwise about products, services, and events that we think might be of interest to you;
  • Maintain or administer the Services, perform business analyses, or for other internal purposes to improve the quality of our business, the Services, and other products and services we offer;
  • Publish stories, comments, photos, and other information posted in our interactive online features;
  • Process employment applications and inquiries;
  • Customize and personalize your use of the Services; and
  • As otherwise described to you at the point of collection or pursuant to your consent.
Sharing of Information

We are committed to maintaining your trust, and we want you to understand when and with whom we may share the information we collect.

Corporate Parents and Affiliates. We may share your information with our corporate parents and other affiliated entities for a variety of purposes, including business, operational, and marketing purposes.

Service Providers. We may share your information with service providers that perform certain functions or services on our behalf (such as to host the Services, manage databases, perform analyses, or send communications for us).

Other Parties When Required By Law or as Necessary to Protect the Services. We may disclose your information to third parties in order to: protect the legal rights, safety, and security of Akcea, our corporate parents and affiliates, and the users of our Services; enforce our Terms of Use; prevent fraud (or for risk management purposes); and comply with or respond to law enforcement or legal process or a request for cooperation by a government entity, whether or not legally required.

In Connection With a Transfer of Assets. If we sell all or part of our business, or make a sale or transfer of assets, or are otherwise involved in a merger or business transfer, or in the event of bankruptcy, we may transfer your information to one or more third parties as part of that transaction.

Other Parties With Your Consent. We may share information about you with third parties when you consent to such sharing, including when you post information to a user profile or a public area of the Services, such as a chat room, forum, blog, or other community tool.

Aggregate Information. We may disclose to third parties information that does not describe or identify individual users, such as aggregate website usage data or demographic reports.

We may allow third parties to place and read their own cookies, web beacons, Local Shared Objects, and similar technologies to collect information through the Services. For example, our third-party service providers may use these technologies to collect information that helps us with traffic measurement, research, and analytics. Local Shared Objects (sometimes referred to as “Flash Cookies”) are similar to standard cookies except that they can be larger and are downloaded to a computer or mobile device by the Adobe Flash media player. Please note that you may need to take additional steps beyond changing your browser settings to refuse or disable Local Shared Objects and similar technologies. For example, Local Shared Objects can be controlled through the instructions on Adobe’s Setting Manager page. If you choose to refuse, disable, or delete these technologies, some of the functionality of the Services may no longer be available to you.

Security

We maintain reasonable security procedures to help protect against loss, misuse or unauthorized access, disclosure, alteration or destruction of the information you provide through the Services. However, no data transmission over the Internet or stored on a server can be guaranteed to be 100% secure. As a result, while we strive to protect your information and privacy, we cannot guarantee or warrant the security of any information you disclose or transmit to us online and cannot be responsible for the theft, destruction, or inadvertent disclosure of your information. In the event that we believe that the security of your information may have been compromised, we will endeavor to give you appropriate notice as quickly as possible, including by email. You consent to our use of e-mail for such notification.

You are responsible for maintaining the confidentiality of your account password and for any access to or use of the Services using your password, whether or not authorized by you. Please notify us immediately of any unauthorized use of your password or account or any other breach of security.

Children’s Privacy

Visitors between the ages of 13 and 18 must obtain permission from their parent or guardian before registering on the Services, providing any information, or participating in online discussions.

Akcea respects the privacy of children and we are committed to complying with the Children’s Online Privacy Protection Act (COPPA). The Services do not knowingly collect, use, or disclose personal information from children under the age of 13 without prior parental consent, except as permitted by COPPA. By providing your consent, you agree that we may collect, use, and disclose your child’s personal information consistent with this Privacy Notice.

Your Choices and Your Information

If at any time you wish to stop receiving emails or other communications from us, or if you have submitted information through the Services and would like to have that information deleted from our records, please notify us.

Users Outside the United States

By using the Services, you consent to the collection, storage, processing, and transfer of your information in and to the United States, or other countries and territories, pursuant to the laws of the United States.

Links to Third-Party Content

As a convenience to our visitors, the Services may link to a number of sites, services, and other content that are operated and maintained by third parties. These third parties operate independently from us, and we do not control their privacy practices. Such links do not constitute an endorsement by Akcea of the content or the persons or entities associated therewith. This Privacy Notice does not apply to third-party content. We encourage you to review the privacy policies of any third-party to whom you provide information.

Modifications to this Privacy Notice

We reserve the right to modify this Privacy Notice from time to time without prior notice. Such changes will be effective immediately upon posting to this Service. Your continued use of the Services after any modification to the Privacy Notice will constitute your acceptance of the new terms and conditions.

Contact Us

If you have any questions about this Privacy Notice, you may contact us at:

Akcea Therapeutics
55 Cambridge Parkway, Suite 100
Cambridge, MA 02142
FCSprivacy@akceatx.com

Terms of Use

Effective Date: March, 2016

These Terms of Use (“Terms”) govern your access to and use of the websites and online services that we operate and that link to these Terms (the “Services”).

Please review these Terms carefully before using the Services because they are a legal contract between you and Akcea Therapeutics, a subsidiary of Ionis Pharmaceuticals (“Akcea”). By using the Services, you agree to be bound by and comply with these Terms. We may change these Terms or modify any features of the Services at any time. The most current version of the Terms can be viewed by clicking on the “Terms of Use” link posted through the Services. You accept the Terms by using the Services, and you accept any changes to the Terms by continuing to use the Services after we post the changes.

Privacy Notice

Our Privacy Notice is incorporated into these Terms by reference and constitutes a part of these Terms. By using the Services, you indicate that you understand and consent to the collection, use, and disclosure of your information as described in our Privacy Notice.

Prohibited Conduct

You may not access or use, or attempt to access or use, the Services to take any action that could harm us or any third party, interfere with the operation of the Services, or use the Services in a manner that violates any laws. For example, and without limitation, you may not:

  • Impersonate any person or entity or falsely state or otherwise misrepresent your affiliation with any person or entity or the origin of any information you provide;
  • Engage in unauthorized spidering, scraping, or harvesting of content or personal information, or use any other unauthorized automated means to compile information;
  • Obtain or attempt to gain unauthorized access to other computer systems, materials, information or any Services available on or through the Services;
  • Use any device, software, or routine to interfere or attempt to interfere with the proper working of the Service or any activity conducted on the Service or attempt to probe, scan, test the vulnerability of, or breach the security of any system or network;
  • Circumvent, reverse engineer, decipher, decompile, disassemble, decrypt, or otherwise alter or interfere with (or attempt, encourage, or support anyone else’s attempt to engage in such activities) any of the software comprising or in any way making up a part of the Services. The use or distribution of tools designed for compromising security (e.g., password guessing programs, cracking tools or network probing tools) is strictly prohibited;
  • Take any action that imposes an unreasonable or disproportionately large load on our network or infrastructure;
  • Upload or otherwise transmit any communication, software, or material that contains a virus or is otherwise harmful to Akcea’s or its users’ computers or systems;
  • Send or cause to be sent any communications (including e-mails) to other users without their consent (e.g., “mailbombs” or “spamming”);
  • Cause damage, embarrassment or adverse publicity to Akcea; or
  • Engage in any other conduct that restricts or inhibits any person from using or enjoying the Services, or that, in our sole judgment, exposes us or any of our users, affiliates, or any other third party to any liability, damages, or detriment of any type.

Violations of system or network security may result in civil or criminal liability. We may investigate and work with law enforcement authorities to prosecute users who violate the Terms. We may suspend or terminate your access to the Services for any or no reason at any time without notice.

Medical Disclaimers

The Services and any information or content provided therein are for informational and educational purposes only and are not a substitute for the professional judgment of a health care professional in diagnosing and treating patients. Akcea does not give medical advice, nor does it provide medical or diagnostic Services. Your reliance upon any content or information provided through the Services is solely at your own risk.

User Content and Communications

You remain fully responsible for the materials that you provide to us, including without limitation information, stories, requests, creative works, pictures, photographs, letters, documents, demos, ideas, suggestions, reviews, concepts, methods, systems, designs, plans, techniques or other materials submitted, posted, uploaded, sent or otherwise transmitted to us (“User Content”). You agree not to provide User Content that:

  • Infringes on the copyright, trademark, patent or other intellectual property right of any third party;
  • Is false, misleading, libelous, defamatory, obscene, abusive, hateful, or sexually-explicit;
  • Violates a third party’s right to privacy or publicity;
  • Degrades others on the basis of gender, race, class, ethnicity, national origin, religion, sexual preference, disability, or other classification;
  • Contains epithets or other language or material intended to intimidate or to incite violence;
  • Contains a virus, worm, Trojan Horse, time bomb, or any other harmful program or component; or
  • Contains any commercial material or solicits any funds (charitable or commercial), perpetuates chain letters or pyramid schemes, promotes commercial entities or otherwise engages in commercial activity.
  • Violates any applicable local, state, national, or international law, or advocates illegal activity.

You may only post User Content that is original and that you have the right to post. By submitting User Content, you grant us a royalty-free, irrevocable, perpetual, non-exclusive, worldwide, fully sublicensable license to publish, reproduce, distribute, display, perform, edit, adapt, modify, translate, create derivative works, make, sell, export, and otherwise use your User Content (or any portion thereof) in any way that we want and in any form, media, or technology now known or later developed. You hereby waive any moral rights you may have in your User Content. You represent that you have obtained all necessary permissions, including the right to use an individual’s likeness in our advertising and marketing activities, from any individuals identified in or implicated by your submission (including those shown in photographic content), and, in the case of minors, also from their parents or legal guardians, as appropriate.

We are not obligated to publish or use your User Content. Akcea is not in any manner endorsing the User Content and cannot, and will not, vouch for its reliability. We do not guarantee any confidentiality with respect to any User Content. Please do not send us any confidential or proprietary information or material.

Akcea is not responsible for any User Content and has no duty to monitor the User Content posted on the Services. You use any information contained in User Content at your own risk.

Akcea and its designees have the right, in their sole discretion, to monitor, review, edit, remove, delete, disable, refuse, restrict, or terminate access to your User Content or the Services (in whole or in part) at any time, without prior notice and in our sole discretion, for any or no reason. The obligations that you have to us under these Terms shall survive termination of the Services, any use by you of the Services, any User Content on the Services, or these Terms. You will not continue to post any User Content that Akcea has previously advised you not to post.

Eligibility and Registration

You may be asked to register for certain activities in connection with the Services by creating a user profile. This registration may allow you to participate in interactive features of the Services, such as forums or discussion boards or to enter sweepstakes and contests. When you register, you agree to provide accurate, current and complete information about yourself as requested or directed on the Services and to promptly update this information to maintain its accuracy. Akcea has the right to suspend or terminate any account or other registration and to refuse any and all current or future use of the Services if it suspects that such information is inaccurate or incomplete. You are responsible for maintaining the confidentiality of any password and username that you are given or select in connection with the Services, and you are responsible for all activities that occur under your password or account.

Intellectual Property

The Services are protected under the copyright, trademark, and other intellectual property laws of the United States and other countries. All intellectual property rights in the Services are owned by us or our third-party licensors to the full extent permitted under U.S. and international intellectual property laws. Except for content that you have posted on the Services, you may not publish, reproduce, distribute, display, perform, edit, adapt, modify, or otherwise exploit any part of the Services, including the Akcea name and logo, without our written consent. You may provide a link to the top page of the Services unless and until Akcea gives notice that you must discontinue linking to the Services.

Third-Party Content and Links to Third-Party Websites

The Services may contain links to Third-Party Content. We do not control, endorse, sponsor, recommend, or otherwise accept responsibility for such content. Use of any linked Third-Party Content is at the user’s own risk.

Disclaimer of Warranties

YOUR USE OF THE SERVICES IS AT YOUR OWN RISK.  WE MAKE NO REPRESENTATIONS OR WARRANTIES ABOUT THE OPERATION OF THE SERVCES OR THE INFORMATION, MATERIALS, GOODS, OR SERVICES APPEARING OR OFFERED ON THE SERVICES, ALL OF WHICH ARE PROVIDED “AS IS.”

WITHOUT LIMITING THE GENERALITY OF THE FOREGOING, WE DISCLAIM ALL WARRANTIES, EXPRESS OR IMPLIED, INCLUDING BUT NOT LIMITED TO (1) THE WARRANTIES OF MERCHANTABILITY AND FITNESS FOR A PARTICULAR PURPOSE; (2) THE WARRANTIES AGAINST INFRINGEMENT OF ANY THIRD-PARTY INTELLECTUAL PROPERTY OR PROPRIETARY RIGHTS; (3) THE WARRANTIES RELATING TO THE TRANSMISSION OR DELIVERY OF THE SERVICES; (4) THE WARRANTIES RELATING TO THE ACCURACY, RELIABILITY, CORRECTNESS, OR COMPLETENESS OF DATA MADE AVAILABLE ON THE SERVICES OR OTHERWISE BY AKCEA; (5) THE WARRANTIES OTHERWISE RELATING TO PERFORMANCE, NONPERFORMANCE, OR OTHER ACTS OR OMISSIONS BY AKCEA OR ANY THIRD PARTY; AND (6) THE WARRANTY OF TITLE.  FURTHER, THERE IS NO WARRANTY THAT THE SERVICES WILL MEET YOUR NEEDS OR REQUIREMENTS OR THE NEEDS OR REQUIREMENTS OF ANY OTHER PERSON.

WE MAKE NO WARRANTIES, EXPRESS OR IMPLIED, (1) THAT THE SERVICES OR ANY EMAIL WE SEND YOU IS FREE OF VIRUSES OR OTHER HARMFUL COMPONENTS THAT MAY INFECT YOUR COMPUTER EQUIPMENT OR OTHER PROPERTY BECAUSE OF YOUR ACCESS TO, USE OF, OR BROWSING ON THE SERVICES OR YOUR DOWNLOADING OF ANY MATERIALS, DATA, TEXT, IMAGES, VIDEO, OR AUDIO FROM THE SERVICES; OR (2) THAT THE SERVICE, WEBSITE CONTENT, FUNCTIONS OR MATERIALS CONTAINED THEREIN WILL BE TIMELY, SECURE, ACCURATE, COMPLETE, UP-TO-DATE, OR UNINTERRUPTED.  AKCEA DOES NOT NECESSARILY ENDORSE, SUPPORT, SANCTION, ENCOURAGE OR AGREE WITH ANY WEBSITE CONTENT OR ANY SUBMITTED MATERIALS, AND WE EXPRESSLY DISCLAIM ANY AND ALL LIABILITY IN CONNECTION WITH USER CONTENT, INCLUDING LINKS TO OR CONTENT CONTAINED ON THIRD PARTY WEB SITES.

IF APPLICABLE LAW DOES NOT ALLOW THE EXCLUSION OF SOME OR ALL OF THE ABOVE IMPLIED WARRANTIES TO APPLY TO YOU, THE ABOVE EXCLUSIONS WILL APPLY TO YOU TO THE FULLEST EXTENT PERMITTED BY APPLICABLE LAW.

Limitation of Liability

UNDER NO CIRCUMSTANCES, INCLUDING NEGLIGENCE, WILL AKCEA, ITS AFFILIATES, OR ANY PARTY INVOLVED IN CREATING, PRODUCING, OR DELIVERING THE SERVICES BE LIABLE FOR DAMAGES OR LOSSES INCLUDING DIRECT, INCIDENTAL, CONSEQUENTIAL, INDIRECT, SPECIAL, OR PUNITIVE DAMAGES AND LOST PROFITS ARISING OUT OF YOUR ACCESS, USE, MISUSE, OR INABILITY TO USE THE SERVICES, WEBSITE CONTENT, USER CONTENT, OR ANY LINKED SITES, HOWEVER CAUSED, WHETHER IN CONTRACT, TORT, NEGLIGENCE, STRICT LIABILITY OR OTHERWISE, EVEN IF AKCEA HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGES, OR IN CONNECTION WITH ANY FAILURE OF PERFORMANCE, ERROR, OMISSION, INTERRUPTION, DEFECT, DELAY IN OPERATION OR TRANSMISSION, COMPUTER VIRUS, OR LINE OR SYSTEM FAILURE.  AKCEA WILL NOT BE A PARTY TO, AND WILL HAVE NO RESPONSIBILITY OR LIABILITY FOR, ANY TRANSACTION NEGOTIATED OR ARRANGED BY A USER ARISING IN CONNECTION WITH THE SERVICES.  IN THE EVENT THAT YOU HAVE A DISPUTE WITH ANOTHER USER RELATED TO, ARISING FROM, OR IN ANY WAY CONNECTED WITH USE OF THE SERVICES, YOU RELEASE AKCEA FROM ANY CLAIMS, DEMANDS, AND DAMAGES OF EVERY KIND AND NATURE ARISING OUT OF OR IN ANY WAY CONNECTED WITH SUCH A DISPUTE.  AKCEA HAS NO OBLIGATION TO BECOME INVOLVED IN ANY DISPUTE BETWEEN A USER AND ANY OTHER PERSON.

THESE LIMITATIONS APPLY WHETHER THE ALLEGED LIABILITY IS BASED ON CONTRACT, TORT, NEGLIGENCE, STRICT LIABILITY, OR ANY OTHER BASIS, EVEN IF AKCEA HAS BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGE.  BECAUSE SOME JURISDICTIONS DO NOT ALLOW THE EXCLUSION OR LIMITATION OF INCIDENTAL OR CONSEQUENTIAL DAMAGES, AKCEA’S LIABILITY IN SUCH JURISDICTIONS SHALL BE LIMITED TO THE EXTENT PERMITTED BY LAW.

WITHOUT LIMITING THE GENERALITY OF THE FOREGOING, AKCEA DISCLAIMS ALL LIABILITY OF ANY KIND ARISING FROM THE UNAUTHORIZED ACCESS TO OR USE OF YOUR INFORMATION.

IF YOU ARE DISSATISFIED WITH THE SERVICES, YOUR SOLE REMEDY IS TO STOP USING THE SERVICES.

Indemnification

You agree to defend, indemnify and hold harmless Akcea and its affiliates, subsidiaries, parent companies, successors, officers, directors, employees, contractors, Services providers, and agents from and against any and all demands, claims, damages, liabilities, judgments, losses, costs, expenses and harms, including reasonable attorneys’ fees, arising in connection with your use of the Services (including, without limitation, your User Content), online conduct, any violation of these Terms, or dealings or transactions with other persons resulting from use of the Services.

Applicable Law; Jurisdiction

These Terms are governed by, and must be construed in accordance with, the laws of the United States and the state of California, as applicable, without giving effect to their principles of conflicts of law. By using the Services, you waive any claims that may arise under the laws of other countries or territories.

With respect to any and all disputes arising out of or in connection with the Services or these Terms (including without limitation the Privacy Notice), Akcea and you agree to negotiate in good faith and undertake reasonable efforts to cooperate with one another in order to achieve a mutually satisfactory resolution. If you and Akcea do not resolve any dispute by informal negotiation, any other effort to resolve the dispute will be conducted exclusively by binding arbitration as described in this section. You are giving up the right to litigate (or participate in as a party or class member) all disputes in court before a judge or jury. Instead, all disputes will be resolved before a neutral arbitrator, whose decision will be final except for a limited right of appeal under the Federal Arbitration Act. Any court with jurisdiction over the parties may enforce the arbitrator’s award.

Any proceedings to resolve or litigate any dispute in any forum will be conducted solely on an individual basis. Neither you nor Akcea will seek to have any dispute heard as a class action or in any other proceeding in which either party acts or proposes to act in a representative capacity. No arbitration or proceeding will be combined with another without the prior written consent of all parties to all affected arbitrations or proceedings.

Akcea and you agree that all disputes arising under these Terms that cannot be settled through informal negotiation will be settled exclusively through confidential binding arbitration in San Francisco, California or another forum mutually agreed upon by the parties, pursuant to the Rules of Arbitration (“rules”) of the International Chamber of Commerce (“ICC”) by a sole arbitrator nominated by agreement of the parties and confirmed in accordance with the said rules. The arbitrator’s award shall be binding and may be entered as a judgment in a court of competent jurisdiction. You agree that Akcea is entitled to obtain preliminary injunctive relief to the extent allowed by law to enforce any of the Terms of these Terms pending a final arbitral decision.

To the extent permitted by law, any claim or dispute under this agreement must be filed within one year in an arbitration proceeding. The one-year period begins when the claim or notice of dispute first could be filed. If a claim or dispute isn’t filed within one year, it is permanently barred.

If any other provision of this section is found to be illegal or unenforceable, that provision will be severed, with the remainder of this section remaining in full force and effect.

Separate Terms and Conditions

In connection with your use of the Services, you may be asked to consent to policies or Terms and Conditions in addition to these Terms. Please read these supplemental policies and Terms carefully before making any use of such portions of the Services. Any supplemental Terms will not vary or replace these Terms regarding any use of the Services, unless otherwise expressly stated.

 Access Outside the United States

Akcea makes no claim that the Services are appropriate for access or use outside the U.S. Your access and use of the Services outside the U.S. are at your own risk, and you are responsible for compliance with the laws of your jurisdiction.

Miscellaneous

These Terms constitute the entire agreement between Akcea and you, superseding any prior or contemporaneous communications and proposals (whether oral, written or electronic) between you and us. In the event any provision of these Terms is held unenforceable, it will not affect the validity or enforceability of the remaining provisions and will be replaced by an enforceable provision that comes closest to the intention underlying the unenforceable provision. You agree that no joint venture, partnership, employment, or agency relationship exists between you and Akcea as a result of these Terms or your access to and use of the Services.

Our failure to enforce any provisions of these Terms or respond to a violation by any party does not waive our right to subsequently enforce any Terms or Conditions of the Terms or respond to any violations. Nothing contained in these Terms is in derogation of our right to comply with governmental, court, and law enforcement requests or requirements relating to your use of the Services or information provided to or gathered by us with respect to such use.