Privacy Policy

Online Privacy Policy

Thank you for reviewing our privacy policy ("Policy"). This site, located at https://www.myamyloidosispathfinder.org, is owned by Amyloidosis Research Consortium ("ARC"). ARC is a patient focused not-for-profit foundation committed to accelerating breakthrough treatments for amyloidosis. This Policy applies to information you provide through this web site. The Policy does not apply to information you may provide through other means, such as through email messages to us or over the telephone. Please read this Policy carefully, and share information with us only if you agree with these terms. Your use of this web site is subject not only to this Policy, but also to this site's Terms of Use. By accessing and using our web site, and by providing us with your information, you agree to be bound by this Policy.

Collection of Information

ARC respects the privacy of visitors to our web site. ARC will collect personal identifiable information, such as your name, e-mail address, address or telephone number, only when you voluntarily submit it to us at our web site, such as in connection with the following:

  1. When you access or use the "My Amyloidosis Pathfinder" solution ("MAP")
  2. When you make a job opportunity inquiry or submission of job application
  3. When you make other voluntary submissions of forms posted on our web site from time to time

When you access and use the MAP services, you also will be asked to enter certain personal health information. Your personal identifiable information will be used by ARC only for the purposes for which you supplied it to us. ARC will not sell, trade, rent or in any way disclose your personal identifiable information to any outside organization for the outside organization's own use without your consent except as required to operate the MAP service and other web site features or where ARC reasonably believes that such disclosure is required by law or unless such information has been de-identified.

The personal health information you enter in MAP will help us to provide the best possible information on clinical trial options and contribute toward a better understanding of amyloidosis overall, inspiring new research studies. When you create a profile on MAP, you provide certain personal information that is necessary to identify possible clinical trial options. You will have the option to elect to allow your personal identifiable information, such as your name, email address and phone number, to be shared with potential clinical sites so that such clinical site may contact you directly. Various profile data such as disease and location information may be retained and used on a de-identified, anonymous basis by ARC and our third party technology provider that owns and operates the MAP solution (the "Licensor"). For example, de-identified and aggregated MAP data may be shared by the Licensor with pharmaceutical and biotechnology companies to help them in planning for clinical trials or may be used by the Licensor to improve, promote or provide its products and services. ARC also may use anonymous and aggregated MAP data internally to support our mission.

You may modify or remove your personal identifiable information from our database by contacting ARC at the following email address: admin@arci.org. Removing your information may cause the MAP service and/or certain web site features to become inaccessible to you.

ARC may collect non-personal identifiable information about your web viewing habits while you navigate this site, including the following:

  • Aggregated Data. ARC may collect user information and content in the aggregate as you use this web site to analyze our overall usage patterns. Aggregate data does not contain any personally identifiable information.
  • Server Logs. ARC may collect information from our server logs. These logs may include information such as your Internet Protocol address, browser details, the date and time of your request and certain information about your usage of this web site.
  • Cookies. We may place a text file called a "cookie" on your computer. This cookie does not contain personal information, although it will enable us to relate your use of this web site to information that you have specifically and knowingly provided. A cookie cannot read data off your computer or read cookie files created by other sites. ARC may use cookies to track user traffic patterns and analyze our overall usage patterns. You can refuse cookies by turning them off in your browser; however, our web site may not function as intended if you do so.
  • Links. ARC may track whether links to external web sites are followed or clicked.

ARC may obtain this non-personal identifiable information through the use of customized software.

In addition, we are committed to protecting the privacy of children. ARC's web site is not intended or designed to attract children under the age of 18. ARC does not collect personal identifiable information from any person we know to be under the age of 18.

In the event of a sale or change of control of ARC or the Licensor, we will take appropriate steps to see that your identity in association with any MAP data will be continue to be kept private. It is understood, however that our rights and the Licensor's rights to such MAP data are assets that may be transferred in the event of such a sale or change of control.

Links to Other Sites

This web site may contain links to a number of sites, which are not owned by ARC, that we believe may offer useful information. The privacy policies and procedures described here do not apply to those web sites. You should contact those web sites directly for information on their data collection and use policies. ARC is not responsible for the content or other information included on such third party web sites.

Security

ARC is committed to providing reasonable measures to protect your personal identifiable information from any unauthorized access or disclosure, and uses industry standard measures to protect your information. In addition to the steps taken by ARC, you should also take measures to safeguard your personal information.

This web site is hosted in the United States. If you are visiting our web site from outside the United States, you are transferring your personal identifiable data into the United States when you voluntarily submit your personal identifiable information. Many regions, such as the European Union, have data collection protections that differ from U.S. law.

Updates

ARC may amend this Policy from time to time. Any substantial changes to the Policy will be promptly communicated on this page. By accessing and using our site after a change is made to the Policy, you agree to be bound by the Policy as revised.

Questions

If you have questions, want more information or would like to report a problem regarding the handling of your personal identifiable information, please contact admin@arci.org.

You have the right to file a complaint with the U.S. Secretary of Health and Human Services or other applicable governmental agency, if you believe your privacy rights have been violated. You will not be penalized or retaliated against for filing a complaint.

Last Updated: February 2017

Terms of Use

PLEASE READ THESE TERMS OF USE CAREFULLY BEFORE USING THE WEB SITE.

This site, located at https://www.myamyloidosispathfinder.org, is owned by Amyloidosis Research Consortium ("ARC"). ARC is a patient focused not-for-profit foundation committed to accelerating breakthrough treatments for amyloidosis. Your use of this web site is subject not only to these Terms of Use, but also to this site's Privacy Policy, the terms of which are incorporated into these Terms of Use. By accessing and using ARC's web site (this "Site"), you acknowledge that you are at least 18 years of age and have read and accept these Terms of Use. If you do not agree to all of the terms and conditions of use, do not use this web site. ARC may modify the web site, and the rules and regulations governing its use at any time, and by continuing use of the web site after such changes are posted, you are deemed to have accepted those changes. You further agree that you accept any and all responsibility and liability related to the use of this web site. These Terms of Use constitute a binding legal agreement between you and Amyloidosis Research Consortium ("ARC," "we," "us," and "our").

1. PURPOSE OF SITE. This Site is for information purposes only. This Site and its content herein should not be used by you for diagnosing a health or fitness problem or disease. For further information about a particular disease, medication, device or other product described on this site consult your physician or medical advisor.

2. USE OF CONTENT; INTELLECTUAL PROPERTY. The content of this Site, including but not limited to the information, materials, images and product names (the "Content"), is protected under applicable copyright and trademark laws. Unless otherwise identified as being owned by another entity, all product names identified by ™ or ® symbols are trademarks owned by or licensed to ARC or its subsidiaries. The Content may not be copied, downloaded and stored in a retrieval system, modified, redistributed, or republished in any way, except that you may download one (1) copy of the Content for your personal informational and noncommercial use only, as long as all copies of the Content retain all copyright, trademark, and other proprietary notices and disclaimers. Nothing contained herein shall be construed as conferring to you by implication, estoppel or otherwise any license or right under any patent, trademark, copyright or other property of ARC or any third party. The information contained in each press release available on this Site, if any, was correct as of the date of such press release was posted. ARC assumes no obligation to update any information contained in such press release, whether to reflect events or circumstances subsequent to the date of such press release or otherwise.

3. HYPERLINK SITES. This Site may contain hypertext links to other web sites that are not owned by ARC ("Hyperlink Sites"). If you access a Hyperlink Site, you do so at your own risk. ARC does not control or endorse any Hyperlink Site, including its content. ARC makes no representations or warranties whatsoever as to a Hyperlink Site including but not limited to a Hyperlink Site's availability or its content. ARC IS NOT RESPONSIBLE FOR THE CONTENT ON THE INTERNET OR WEB PAGES THAT ARE CONTAINED OUTSIDE THE SITE. Your correspondence or business dealings with, or participation in promotions of, third parties found on or through the Site, and any other terms, conditions, warranties, or representations associated with such dealings, are solely between you and such user, advertiser, or partner. You agree that we are not responsible or liable for any loss or damage of any sort incurred as the result of any such dealings or as the result of the presence of such third parties on the Site.

4. INFORMATION. Except as otherwise required under ARC's Privacy Policy or under separate terms and conditions signed by you and ARC, any information received by ARC from third parties, in the form of questions, comments, suggestions or the like regarding the content of this publication or any other aspect of the business of ARC shall be deemed to be non-confidential and ARC shall have no obligation of any kind with respect to such information and shall be free to reproduce, use, disclose, and distribute the information to others without limitation. ARC shall be free to use such information, including any ideas, concepts, know-how or techniques contained therein, for any purpose whatsoever including but not limited to researching, developing, manufacturing, selling and marketing products based upon or incorporating such information.

5. DISCLAIMER OF WARRANTY. THIS SITE IS PROVIDED BY ARC ON AN "AS IS" AND "AS AVAILABLE" BASIS. USE OF THIS SITE IS AT YOUR OWN RISK. ARC MAKES NO WARRANTIES OR REPRESENTATIONS OF ANY KIND, EITHER EXPRESS OR IMPLIED AS TO THE OPERATION OF THIS SITE (INCLUDING ITS AVAILABILITY) OR THE MATERIALS, OR CONTENT INCLUDED ON THIS SITE. FURTHER, ARC EXPRESSLY DISCLAIMS ANY OBLIGATION TO UPDATE OR CORRECT INFORMATION CONTAINED ON THIS SITE AND EXPLICITLY DISCLAIMS ANY DUTY TO DO SO. ARC ASSUMES NO LIABILITY OR RESPONSIBILITY FOR ANY ERRORS OR OMISSIONS IN THE CONTENT OF THIS SITE. YOU EXPRESSLY AGREE THAT YOUR USE OF THIS SITE IS AT YOUR OWN RISK AND AS SUCH YOU ASSUME FULL RESPONSIBILITY AND ALL RISKS ARISING FROM YOUR USE OF THIS SITE. TO THE FULL EXTENT PERMITTED BY APPLICABLE LAW, ARC DISCLAIMS ALL WARRANTIES, EXPRESS OR IMPLIED, INCLUDING BUT NOT LIMITED TO, WARRANTIES OF MERCHANTABILITY, FITNESS FOR A PARTICULAR PURPOSE, TITLE OR NON-INFRINGEMENT.

6. LIMITATION OF LIABILITY; INDEMNITY. TO THE FULL EXTENT PERMITTED BY APPLICABLE LAW, IN NO EVENT SHALL ARC, ITS SUBSIDIARIES, AFFILIATES, DIRECTORS, OFFICERS, EMPLOYEES, REPRESENTATIVES, AND AGENTS BE LIABLE FOR ANY DAMAGES OF ANY KIND ARISING FROM THE USE OF THIS SITE OR A HYPERLINK SITE, INCLUDING BUT NOT LIMITED TO, DIRECT, INDIRECT, INCIDENTAL, PUNITIVE, AND CONSEQUENTIAL DAMAGES, EVEN IF ADVISED OF THE POSSIBLITY OF SUCH DAMAGES IN ADVANCE. CERTAIN JURISDICTIONS DO NOT PERMIT LIMITATIONS ON IMPLIED WARRANTIES OR THE EXCLUSION OF CERTAIN DAMAGES. PLEASE CHECK IF SUCH LAWS APPLY TO YOU. You agree to indemnify and hold ARC, its subsidiaries, affiliates, officers, agents, and other partners and employees, harmless from any loss, liability, claim, or demand, including reasonable attorneys' fees, arising out of, resulting from or connected with the use, modification, misinterpretation, misuse, or reuse by you of the Site or Content, including without limitation these Terms of Use.

7. MODIFICATIONS. ARC reserves the right to modify this Site including its Content, policies, and Terms of Use at any time without prior notice to you.

8. SEVERABILITY. If any term or condition of these Terms of Use shall be deemed to be invalid, void, illegal, or for any reason unenforceable, that term or condition shall be deemed severable and shall not affect the validity and enforceability of the remaining terms and conditions.

9. GOVERNING LAW AND JURISDICTION. In the event of any dispute between you and ARC or its affiliates arising under or from these Terms of Use or your use of this Site, such dispute shall be governed and construed under the laws of the Commonwealth of Massachusetts without regard to principles of conflict of laws.

10. GENERAL. ARC's failure to act in a particular circumstance does not waive its ability to act with respect to that circumstance or similar circumstances. These Terms of Use compose the entire agreement between you and ARC and supersede all prior agreements between the parties regarding the subject matter contained herein.

11. QUESTIONS

Please direct any questions regarding these Terms of Use to admin@arci.org.

Last Updated: February 16, 2017

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