General Terms and Conditions and Privacy Policy of the HAE Canada HAE Attack Tracker

Last updated: September 2, 2014

1. Scope, applicability and changes

These general terms and conditions ("GTC") shall exclusively govern all rights and obligations between HAE Canada, 1081 Carling Ave. Suite # 408 Ottawa, ON, K1Y 4G2 ("Operator") and users ("User") of the platform HAE Attack Tracker ("HAE Attack Tracker"), in particular in connection with the processing of health-related data and personal data uploaded by the User, and the information and services offered on these platforms.

Upon agreement to share data on HAE Attack Tracker, the User agrees that they have read, fully understood, accepted these GTC, and will comply with all applicable laws and regulations as they may change from time to time.

IF YOU DO NOT ACCEPT AND AGREE TO BE LEGALLY BOUND BY AND COMPLY WITH THESE GTC, YOU ARE NOT PERMITTED TO ACCESS OR USE THE HAE ATTACK TRACKER.

These GTC may only be accepted, and HAE Attack Tracker may only be used by persons who have reached the age of majority in their jurisdiction of residence, or with the consent of the parent or legal guardian in the case of a minor.

These GTC are subject to change by the Operator at any time. Amendments to the GTC will be notified to the User by email or upon visiting the HAE Attack Tracker platform. Users who do not wish to accept the amended GTC must immediately cease using the HAE Attack Tracker platform.

Continued use of the platform after notification of the changes shall be deemed to constitute acceptance of the amended GTC by the User (and their parent or legal guardian on their behalf, if they are under the age of majority in their jurisdiction of residence).

These GTC shall also apply in full to all future amendments and extensions to the HAE Attack Tracker platform.

You hereby acknowledge and agree that the Operator reserves the right at any time to modify or discontinue the whole, or any part of, the HAE Attack Tracker platform, without notice, and will not be responsible or liable, directly or indirectly, to you or any other person or entity for any loss or damage of any kind incurred as a result of any such modifications or discontinuance.

2. Offers and content on HAE Attack Tracker

On HAE Attack Tracker, the Operator offers registered Users a platform for the following purposes:

  • To keep a journal of the regularity, duration, location, and severity of Hereditary Angioedema (HAE) attacks
  • To share anonymous data about these attacks with the developer of this application
  • To provide information about whether treatment was required for the attack, the impact of the attack on attendance at school or work, and whether hospitalization was required for the attack
  • To take personal photos displaying the physical symptoms of the associated attack

You may choose which information you record on the HAE Attack Tracker. The information that Users can record on HAE Attack Tracker ("User Data") is classified in the following categories:

"Personal data": Email address
"Health data": All HAE attack information you provide, including information related to regularity, duration, location and severity; treatment requirements, impact on attendance at school or work, and hospitalization.
“Photo”: A personal photo(s) displaying the physical symptoms of the associated attack

The User Data are not made available by the Operator; instead they are recorded by Users on HAE Attack Tracker. The Operator does not check the content of the User Data.

The Operator is entitled to reject, delete and adapt content, exclude Users, and cease the provision of services if there is an indication of an infringement of applicable laws, a breach of these GTC or deficiencies in quality, or without stating any reasons at its sole discretion.

3. Use of health data and consent to inspection by third parties

The above-mentioned User Data aims to assist and better understand HAE. To achieve this goal, the Operator may access the User's anonymous Health Data for internal market research purposes.

The operator may share these data with third parties for the purpose of storage and analysis. For this reason, the User is only permitted to enter information that they consent to have made available to third parties. Email addresses and other information that identifies the User will not be included with the Health Data viewed by such third parties.

As a rule, third parties are not able to identify a User on the basis of the User Data. However, the Operator cannot guarantee the anonymity of the Users in full. Please only provide the HAE Attack Tracker with information that you agree to be shared as set out above. Users may withdraw their consent to the sharing of User Data by adjusting the settings of the HAE Attack Tracker.

By agreeing to include personal photos demonstrating physical symptoms of the attack, the User understands that they are associating their Attack Record with their identity. It is at the User’s sole discretion as to whom they share this record with. Photos will not be included in the Health Data shared with third parties.

Upon acceptance of sharing anonymous data, the User fully consents to the use of their Health Data in the described manner and to their transmission to third parties.

The Operator reserves the right to transfer any User Data we have in the event that we merge with or are acquired by a third party. We may also use your User Data, or disclose it to third parties, if we have reason to believe that using or disclosing such information is necessary to: (i) conduct investigations of possible breaches of law; (ii) identify, contact, or bring legal action against someone who may be violating an agreement they have with us; (iii) to investigate security breaches or cooperate with government authorities pursuant to a legal matter; or (iv) to protect our rights, safety or property. We may use or disclose your User Data for any other purpose to which you consent.

4. Data protection

The Operator undertakes to comply with Canadian data protection law.

The Operator shall save and process the User Data entered by Users on HAE Attack Tracker to deliver its services, to improve and expand the services offered by the Operator, to obtain insights about HAE attacks and treatment options, and for medical research.

The Operator may make the data entered on HAE Attack Tracker by Users, including personal data, available to third parties for the purpose of, but not limited to, storing of User Data and analyzing Health Data. The Operator shall require third persons who have access to the User Data to observe data protection regulations. We may transfer User Data to third party service providers that assist us with carrying out the purposes described in these GTC. Whenever any User Data is transferred to such a third party service provider, that party will be contractually bound to use such User Data only to carry out the services we have requested, to abide by these GTC, and to provide adequate protection for the User Data.

As described in Section 3, the Operator may make the User Data entered by Users on HAE Attack Tracker available to third parties that may well be located in countries that lack data protection legislation equivalent to corresponding Canadian legislation. Some or all of the User Data we collect may be stored or processed on servers or disclosed to entities located outside your jurisdiction of residence, including in the United States. As a result, this information may be subject to access requests from governments, courts or law enforcement in those jurisdictions according to laws in those jurisdictions. Subject to applicable laws in such other jurisdictions, we will use reasonable efforts to ensure that appropriate protections are in place to protect the information. Any liability for damage caused by such third parties, in particular by persons used by the Operator to perform its contractual obligations, is excluded to the extent permitted by law.

Personal information collected by the Operator may only be accessed by persons within our organization or our third party service providers, who require such access to carry out the purposes indicated in these GTC or otherwise disclosed to you. We retain your personal information in Toronto, Canada.

The User expressly consents to data processing and data disclosure as described in this Section.

5. Storage and deletion of the User's data

If the use of HAE Attack Tracker is terminated in any way, the Operator may irrevocably delete all data of the User entered previously.

Upon termination of the use of HAE Attack Tracker, the User may request the Operator to delete the existing personal data (e.g., email addresses). To this end, the User must send an email with a corresponding request to support@HAEattacktracker.com. The User may, however, not request deletion of anonymous health data. The Operator reserves the right to continue using anonymous health data for the purposes stated in Section 3.

We retain personal information that we collect only as long as reasonably necessary to fulfill the purposes for which it was collected or to meet any legal requirements. We have retention standards that meet these requirements. We destroy personal information when it is no longer needed for the purposes for which it was collected.

6. User Waivers and Representations (Re: User Data)

By using the HAE Attack Tracker and providing User Data, you (and your parent or legal guardian on your behalf, if you are under the age of majority in your jurisdiction of residence) hereby acknowledge, agree, warrant and represent to the Operator that any and all User Data (in any format or media) you post on, upload to or otherwise submit to or through the HAE Attack Tracker:

  • is original to you and that you have obtained all necessary rights in and to the User Data and all of its components (if applicable) to post, upload, or otherwise submit it to or through the HAE Attack Tracker; and
  • does not violate any law.

You hereby agree that you shall not use the HAE Attack Tracker to upload, post, communicate or otherwise submit or transmit through, or to, the HAE Attack Tracker any User Data that:

  • is deemed, in the sole and absolute discretion of the Operator, to be defamatory, trade, libellous, pornographic or obscene;
  • is deemed, in the sole and absolute discretion of the Operator, to contain, depict, include, discuss or involve, without limitation, any of the following: nudity; alcohol/drug consumption or smoking; explicit or graphic sexual activity, or sexual innuendo; crude, vulgar or offensive language and/or symbols; derogatory characterizations of any ethnic, racial, sexual, religious or other groups; content that endorses, condones and/or discusses any illegal, inappropriate or risky behaviour or conduct; personal information of individuals, including, without limitation, names, telephone numbers and addresses (physical or electronic); commercial messages, comparisons or solicitations for products or services other than products of the Operator; any identifiable third party products, trade-marks, brands and/or logos, other than those of the Operator; conduct or other activities in violation of this GTC; and/or any other content that is or could be considered inappropriate, unsuitable or offensive, all as determined by the Operator in its sole and absolute discretion;
  • contains any reference to or likeness of any identifiable third parties, unless consent has been obtained from each such individual and his/her parent/legal guardian if he/she is under the age of majority in his/her jurisdiction of residence;
  • infringes, or might infringe, the intellectual property rights, privacy rights, rights of publicity or other proprietary rights of others or give rise to any claims for payment whatsoever;
  • contains any viruses, trojan horses, time bombs or any other computer code, files or programs designed to interrupt, destroy or limit the functionality of any computer software or hardware or telecommunications equipment;
  • contains (in any format or media) any music, logos, trade-marks or other copyrighted materials (e.g., photographs, pictures, texts, lyrics, etc.) unless you have first obtained consent from the owner of such materials.

Without limiting the generality of the foregoing, you (and your parent or legal guardian on your behalf, if you are under the age of majority in your jurisdiction of residence) also hereby acknowledge, agree, warrant and represent to the Operator that we cannot (nor are we required to) guarantee the accuracy, reliability or completeness of any User Data.

7. Copyright License Granted by Users to Operator (Re: Health Data)

The HAE Attack Tracker permits you to upload, post or otherwise transmit Health Data. By using any such features and/or portions and providing Health Data, you (and your parent or legal guardian on your behalf, if you are under the age of majority in your jurisdiction of residence) are giving the Operator permission to forever use any Health Data you submit.

By using the HAE Attack Tracker and providing Health Data, you (and your parent or legal guardian on your behalf, if you are under the age of majority in your jurisdiction of residence) hereby: (i) grant to the Operator a world-wide, perpetual, irrevocable, transferable, sub-licensable, royalty-free, non-exclusive, and unrestricted license to copy, reproduce, adapt, transmit, edit, modify or otherwise use, distribute, translate and create compilations and derivative works from any and all Health Data (in any format or media) that you post on, upload or otherwise submit to or through, the HAE Attack Tracker; and (ii) waive all moral rights in and to all Health Data that you post on, upload or otherwise submit to or through, the HAE Attack Tracker in favour of the Operator.

All anonymous Health Data can be used permanently and without remuneration as part of the HAE Attack Tracker platform and as part of other services of the Operator.

The copyright in all content generated by the Operator shall be held exclusively by the Operator or any specifically mentioned legal title holders. Any reproduction of elements requires the prior written consent of the Operator.

8. Intellectual Property Rights (Re: HAE Attack Tracker)

The HAE Attack Tracker consists of various graphics, texts, icons and buttons that have been provided by the Operator and/or other entities under our direction (e.g., designers). All such content is owned by the Operator and/or the applicable third party entity. For greater certainty, the Operator and applicable third party entities hold all right, title and interest in and to any and all content provided by such parties for the HAE Attack Tracker, including, without limitation, all such information in text, graphical, video and audio formats, images, icons, designs, trade-marks, brand names and software (collectively, the “Attack Tracker Content”). You hereby acknowledge that the Attack Tracker Content is protected by all copyright, trade-mark and other applicable intellectual property laws. Your use of the HAE Attack Tracker does not grant or transfer to you any ownership or other rights in the Attack Tracker Content and, except as expressly provided, nothing herein or within the HAE Attack Tracker shall be construed as conferring on you or any other person any license under any of the Operator or any third party’s intellectual property rights, including, without limitation, any right to download, display, reproduce, distribute, modify, edit, alter or enhance any of the Attack Tracker Content in any manner whatsoever. Any rights not expressly granted to you in this GTC are expressly reserved by the Operator. For greater certainty, you agree that you will not take any action that is inconsistent with the Operator ownership of the HAE Attack Tracker and/or the Operator ownership of, or any third party’s ownership of, any Attack Tracker Content.

The Operator hereby grants each user of the HAE Attack Tracker a limited, non-exclusive and revocable license to make personal and non-commercial use of the HAE Attack Tracker and the Attack Tracker Content, solely as contemplated by this GTC, and the HAE Attack Tracker’s native functionality. For greater certainty, this limited license only allows you to view, download and upload materials to the HAE Attack Tracker for your own personal and non-commercial use. This limited license does not include any rights not specifically enumerated herein and, for greater certainty, does not include permission to copy, redistribute, reproduce or republish, in any form, any content contained within this HAE Attack Tracker.

Certain names, graphics, logos, icons, designs, words, titles or phrases contained within the HAE Attack Tracker may constitute trade names, registered or unregistered trade-marks or service marks (collectively, “Trade-marks”) of the Operator or other entities. Trade-marks may be registered in Canada and in other countries as applicable. All Trade-marks not owned by the Operator are the property of their respective owners, and, where used by the Operator, are used under license or with permission. All Trade-marks are and shall remain the sole and exclusive property of their respective owner(s). Any use of such Trade-marks, except as expressly provided for herein, without the express written consent of the applicable owner is strictly prohibited. Nothing contained herein or on the HAE Attack Tracker may be construed as granting, by implication, estoppel or otherwise, any license to use any Trade-mark(s). You agree that you will not take any actions inconsistent with the Operator ownership of, or any third party’s ownership of, the Trade-marks.

9. Liability and Indemnification

The HAE Attack Tracker platform is NOT a substitute for consulting a medical doctor. If you suffer from HAE attacks, you should consult a correspondingly trained medical doctor as soon as possible.

The majority of the content on HAE Attack Tracker is not generated by the Operator, and the Operator does not perform any content control of the User Data. For this reason, the Operator does not warrant that the data are accurate, current, lawful and do not infringe the rights of third parties or as to the quality of the User Data; likewise, the Operator does not warrant the accuracy or suitability of any overviews, analyses, statistics on diagnostics or treatments or any improvement or cure. The Operator also does not warrant that all Users will abide by the provisions of these GTC, in particular in regard to the input of the content, will refrain from entering unlawful content, or will act in good faith. The liability of the Operator for damage, costs and futile expenses resulting from the content of HAE Attack Tracker is herewith excluded. Any use of the content of HAE Attack Tracker is at the User’s own risk.

Unfortunately, the transmission of data via the Internet is not totally secure. Even though the Operator takes suitable measures to protect the content of Users, the Operator does not guarantee that the data of the User are fully secure against unauthorized access and unauthorized use by third parties. Any input of content on HAE Attack Tracker is at the User's own risk. The Operator is not liable for the temporary non-availability of the platform, for the non-availability of individual functions, for malfunctions or for data theft and data losses.

The HAE Attack Tracker and all information contained on or accessed from the HAE Attack Tracker is provided on an “as is” and “as available” basis, and without any representations, warranties or conditions of any kind, whether express or implied. All conditions, representations and warranties, whether express, implied, statutory or otherwise are hereby disclaimed to the fullest extent permitted by law.

By using the HAE Attack Tracker, you (and your parent or legal guardian on your behalf, if you are under the age of majority in your jurisdiction of residence) hereby agree to indemnify, defend and hold harmless the Operator, and each of its respective agents, employees, directors, successors, and assigns (collectively, the “Releasees”) from any loss, liability, claim, demand, damage or expense asserted by any entity relating in any way to your use of the HAE Attack Tracker, User Data, and/or breach of these GTC, including, without limitation, any and all claims based on publicity rights, defamation, invasion of privacy, copyright infringement, trade-mark infringement or any other cause of action.

Without limiting the generality of the foregoing, the releasees make no representation or warranty that: (i) the HAE Attack Tracker will be compatible with your device and software; (ii) the HAE Attack Tracker will be available or will function without interruption or error; (iii) the use of the HAE Attack Tracker, including, without limitation, any information, will be free of any viruses, trojan horses, worms or other destructive, intrusive or disruptive components; (iv) the transmission of information to and from the HAE Attack Tracker will be secure; (v) the use of the HAE Attack Tracker will not infringe the rights (including, without limitation, intellectual property rights) of any person; or (vi) the use of the HAE Attack Tracker will not cause any damage to your device, software or electronic files.

The releasees will not under any circumstances be liable to you or any other person or entity for any damages whatsoever arising from, connected with, or relating to the HAE Attack Tracker. You expressly acknowledge that the Operator has entered into this agreement with you (or, with your parent/legal guardian on your behalf if you are under the age of majority in your jurisdiction of residence) and makes the HAE Attack Tracker available to you, in reliance upon the limitations and exclusions of liability and the disclaimers set forth herein, and that the same form an essential basis of the bargain between you (or, your parent/legal guardian on your behalf if you are under the age of majority in your jurisdiction of residence) and the Operator. You (and your parent/legal guardian on your behalf if you are under the age of majority in your jurisdiction of residence) expressly agree that the limitations and exclusions of liability and the disclaimers set forth herein will survive, and continue to apply in the case of a fundamental breach or breaches, the failure of essential purpose of contract, the failure of any exclusive remedy, or termination of these GTC.

The liability of the Operator is excluded to the extent permitted by law.

If a User or third party asserts claims against the Operator for an infringement of their rights by a User due to content entered on HAE Attack Tracker, the Operator may disclose the identity and the location of the User from whose user account the content was entered, and the User concerned undertakes to indemnify the Operator from all claims, damage and expenses (including court fees and legal costs).

10. Prohibited activities

The following activities are specifically prohibited on the HAE Attack Tracker platform:

  • Infringement of applicable laws
  • Infringement of the personality rights of other Users and third parties
  • Violation of proprietary rights of third parties
  • Disruption of the operation of the platform
  • Publication of the content of other Users or of the Operator
  • Use of the platform content for uses other than those explicitly provided for
  • Advertising for medical products or services for commercial purposes
  • The deliberate entry of inaccurate user data
  • The use of the platform for commercial purposes
  • And any other form of abuse of the platform, as determined by the Operator in its sole and absolute discretion

The Operator is entitled to take technical measures to ensure that illegal activities can be discovered, prevented and prosecuted.

Any breach of the prohibition of the above activities constitutes a serious violation of the GTC and entitles the Operator to exclude the User with immediate effect. The same applies also in the event of a (partial or comprehensive) contract of use for remuneration without giving rise to claims for compensation for the benefit of the User. Any further claims of the Operator, other Users or third parties remain reserved.

11. User Responsibilities

The User is obliged to keep the identification elements (email addresses) assigned to them by the Operator or modified by the User secret from third parties.

The User shall take the necessary measures to ensure that third parties are not able to use their account without authorization or gain access to it. In this regard, they should take precautions in particular:

  • By securing the access device with a password
  • By deregistering from HAE Attack Tracker, deleting the browser history and cookies after using HAE Attack Tracker on access devices that may also be used by third parties (e.g., Internet café).
  • The User is aware that every person who is in possession of their access data, may enter data in their name in the platform, or may view their User Data already entered on the platform, will be deemed by the Operator to be authorized to act on behalf of the User concerned.

The User shall be responsible for providing at all times up-to-date and accurate personal data to the Operator. In particular, they shall provide an email address to which emails can be effectively transmitted and from which emails are retrieved at regular intervals. Moreover, they shall ensure that the emails of the Operator are not blocked and that there are no delivery obstacles due to spam filters or capacity restrictions that prevent receipt of the emails.

The User is responsible for ensuring that they meet the technical requirements for accessing and using the HAE Attack Tracker platform.

12. Termination of the use

The use of HAE Attack Tracker can be terminated at any time by the User and takes effect immediately. Notice of termination by the User shall be sent to the email support@HAEattacktracker.com or to a corresponding function that may be available on HAE Attack Tracker.

In the case of inactivity of the User (in other words, if the User does not make use of the HAE Attack Tracker platform) for more than six months, the Operator may terminate the use by the User. However, in this case, the Operator shall notify (see Section 13) the User at least one month before termination of the fact that his use will be terminated in the event of continued inactivity.

The Operator is authorized to terminate the use in the event of an abuse of the platform by the User (see Section 10) without notice period and at any time and permanently exclude the User with immediate effect from further use of the platform. In such a case, the User will be informed by email and will not be permitted to register again on the HAE Attack Tracker platform.

The Operator may, in its sole discretion, change, suspend or terminate, temporarily or permanently, the HAE Attack Tracker or any part thereof or any of its features at any time, for any reason, without any notice or liability to you or any other entity. If these GTC or your permission to use the HAE Attack Tracker is terminated by the Operator for any reason, the agreement formed by your (or, your parent’s or legal guardian’s on your behalf, if you are under the age of majority in your jurisdiction of residence) acceptance of this GTC will nevertheless continue to apply and be binding upon you in respect of your prior use of the HAE Attack Tracker and anything relating to or arising from such use. If you are dissatisfied with the HAE Attack Tracker or with this GTC, then your sole and exclusive remedy is to discontinue using the HAE Attack Tracker.

13. Notification by the Operator to the User

Notifications by the Operator to the User shall be made in one of the following formats and are thus deemed to have been validly transmitted:

  • Placing of the information in an easily visible position on the HAE Attack Tracker platform, e.g., as part of the registration process or on the start screen after successful login
  • Via email to the email address provided by the User during registration or as amended at a later stage. A notice shall be deemed to have been validly transmitted even if the User has not yet read the email or has not received the email if he has provided an incorrect email address

14. Malfunctions

The Operator seeks at all times to ensure that the platform functions properly. Foreseeable disruptions (e.g., necessary maintenance works on servers or similar works) will be announced, if possible, in advance.

Malfunctions of the platform (even where they lead to a loss of data), irrespective of advance notification or not, do not give rise to any claims against the Operator or against third parties that provide contractual services on behalf of the Operator.

15. General

If one or more provisions of these GTC are invalid and/or incomplete, the invalid and/or incomplete provision shall be replaced by another valid provision that comes as close as possible in effect to the invalid and/or incomplete provision. The invalidity and/or incompleteness of a provision shall not affect the validity of the remaining provisions. No failure to exercise or waiver of any provision of these GTC shall be deemed a further or continuing waiver of such provision or any other provision of these GTC. These GTC are binding upon you, your heirs, executors, beneficiaries, successors and assigns and you may not assign these GTC to any other party without the prior written consent of the Operator, which consent may be withheld in our sole and absolute discretion.

The legal relationship between the Operator and the User shall be governed exclusively by Canadian law.

The exclusive place of jurisdiction for disputes arising out of or in connection with any contract between the Operator and the User shall be the registered office of the Operator.

16. Access and Rectification

You have a right to request access to your personal information and to request a correction to it if you believe it is inaccurate. If you have submitted personal information to the Operator and would like to have access to it, or if you would like to have it removed or corrected, please contact us using the contact information provided below. We will use reasonable efforts to comply with your request; however, in some cases we may not be able to allow you to access certain personally identifiable information in certain circumstances, for example, if it contains personal information of other persons, or for legal reasons. In such cases, we will provide you with a reasonable explanation of why it is not possible to grant access to your personal information.

17. How to Contact Us

If you have any questions regarding these GTC or any User Data you have submitted to us, please advise us by contacting our Privacy Officer by writing info@haecanada.org