GlomCon Network Community Website Terms of Use
Updated version: October 23, 2022
The Community Website Terms of Use (“Terms of Use”) are defining the conditions under which you may access and use the Community Website and all the functionalities provided (hereinafter designated together the “Service”).
By accessing or using the Service or by logging into with your allocated User ID, you agree to be bound by these Terms of Use. The User undertakes to have legal ability and means required to access and use the Service and acknowledges to have read, understood and accepted without limitation or reservation the Terms of Use, which apply in addition to the Privacy Policy.
These Terms of Service are permanently available in GlomCon Network’s Resource Library in the folder “Terms of Use & Privacy Policy”
Please review these Terms of Service carefully prior to using the Service. If you do not agree with these Terms of Use, please do not use the Service.
This Site Does Not Provide Medical Advice
All of the content provided on the Platform, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings, and any other material provided on the Platform, are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health providers regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on this Platform.
The Service is provided by Glomerular Disease Study and Trial Consortium (GlomCon):
Glomerular Disease Study and Trial Consortium (GlomCon), Registered office: 667 Sequoia Valley Rd, Mill Valley, 94941 CA, USA
Nonprofit, 501(c)(3)
Registered in the State Pennsylvania Trade and Companies Register under the number: 7210162
E-mail: [email protected]
Phone number: 001 (203) 927-987
Publication Director: Ali Poyan Mehr
Hosting:
Google Cloud Platform
Company located at Gordon House, 4 Barrow St, Dublin, Ireland
Registered in the Dublin Trade and Companies Register under the number: 752925594
Phone number: +353 1 436 1000
Community Website: the online platform named GlomCon Network, edited by Hivebrite and provided by GlomCon, allowing User to benefit from the Service.
Data Protection Law: means the Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data (General Data Protection Regulation) and California Consumer Privacy Act of 2018 for members not submitted to EU data protection regulation.
User Account: means a dedicated online account opened by any visitor and providing an access to the Service.
Identifiers: means login and password or social login the User used to create the User Account.
Party or Parties: means the User and GlomCon designated either individually or collectively.
Service: means the Community Website and all the functionalities provided thereto and described in the Terms and Conditions.
Service Content: any data, text, files, information, usernames, images, graphics, photos, profiles, audio and video clips, sounds, works of authorship, applications, links, and other content or materials made available during the Service.
User or Users: means any person authorized by <customer name> to access and use of the Service after creation of a User Account.
User Content: any content created, posted, or shared by the User, on or through the Service including any information, data, photos and other content relating to the User.
The Terms of Service will come into effect on first access to the Service for the entire duration of use.
The Service enables Users to connect with each other, build communities, or also do networking. Only patients, caregivers, and practicing kidney disease specialists are allowed to join GlomCon Network and its community. People with financial conflicts of interests (such as representatives or employees in the pharmaceutical industry, biotech, marketing and advertisement, financial and consulting services, and other related businesses) are barred from joining due to the inherent conflict of interest.
The Service comprises a suite of online services provided by GlomCon, allowing the User to:
These Terms of Service govern the use of each component of the Service.
Access to the Service shall be subject to the creation of a User Account.
The Service is available on the website network.glomcon.org or GlomCon Network in App stores
The User must ensure to has (the “User’s System”):
Users shall bear all the costs for accessing the Service.
This shall require the entering of personal identification data through the online registration form accessible at the following address: network.glomcon.org
The User shall enter user identification data such as name, surname, and email and is invited to choose its Identifiers.
The User can also create a User Account by connecting through his or her Facebook/LinkedIn/Google account.
The User agrees to provide only accurate and complete information when creating or updating his/her Account information.
In order to benefit from the Services, the User must log-in with the Identifiers (e.g. email and password or the Facebook/LinkedIn/Google account the User used to create the User Account. Identifiers are personal and confidential. Users are responsible for keeping it secret and not disclose it to any third party in any form and for any reason whatsoever.
The User’s login can only be changed at the request of the User or at the initiative of GlomCon. The User’s password is modifiable by the User through the User’s Account. The User is solely and entirely responsible for the use of the User’s Identifiers and undertakes to do everything possible to keep it secret and not to disclose them to anyone, in any form whatsoever and for any reason whatsoever. If the User forgets her/his password, the User can generate a new one by clicking on the link “Reset my password” available.
The User is solely responsible for the activity that occurs on its User Account and will be responsible to keep its Identifiers secure and for the use of his Identifiers by third-parties or for any actions or declarations made through his User Account, whether fraudulent or not, and guarantees GlomCon against any request in this respect.
If the User has reason to believe that a person is fraudulently using identification elements or his User Account, she or he must immediately inform GlomCon by e-mail at the following address [email protected]
The User is solely responsible for the improper access, damage, disruption, loss or theft and adverse consequences caused by its breach of the confidentiality of the Identifiers. In case of loss, misappropriation or unauthorized use of its password, the User shall immediately notify GlomCon.
Users may not use another’s account without permission. A User Account may not be shared, transferred, or sold to other parties, nor are they to be used by or made available to any person or entity except the registered user.
The Service is available for free of charge (excluding any connection costs, whose price depends on your electronic communication service provider).
The Service and the Service Content belong and shall remain the property of GlomCon or its licensors as appropriate, and is protected by copyright, patent when applicable, trade secret and other intellectual property laws.
The User shall not acquire any of such rights title and interest (including, without limitation, all intellectual property rights such as copies, modifications, extensions and derivative works thereof) save as otherwise expressly set out in this Article 7.2 and the User shall take all necessary measures to this effect. All rights not expressly granted to Users are reserved and retained.
Any reproduction, representation, distribution, modification, adaptation or translation of these various Service Content, in whole or in part, in any form and current or future medium is strictly prohibited, except within the limit of the Terms of Service or with prior express authorization of GlomCon. Any use of these Service Content not expressly authorized by GlomCon shall constitute a violation of the Terms of Use and a violation of intellectual property rights.
Except as specifically permitted by these Terms of Use, User may not use or register any name, logo, brand or insignia of GlomCon or any of its schools or subdivisions for any purpose except with GlomCon’s prior written approval and in accordance with any restrictions required by GlomCon. These are the property of GlomCon or are subject to rights to use, duplicate or represent/communicate to the public that have been granted to such.
GlomCon is the producer of databases on the Community Website and GlomCon is the owner of any databases made available. The User shall not extract or reuse a substantial qualitative or quantitative portion of the databases, including for private purpose.
GlomCon grants the User a limited, non-exclusive, non-transferable, and revocable license to use the Service for User’s personal, non-commercial purposes. The User may only use the Community Website on devices that User owns or controls and as permitted by the App Store terms of service. User may use the Service and the Service Content only in the manner and for the purposes specified in these Terms of Use. Except as specifically permitted by these Terms of Use, User may not modify, transmit, produce, distribute, display, sell, license, broadcast, or otherwise make available in any form or by any means any part of the Service or the Service Content without the express written permission of GlomCon.
In connection with the use of the Services and Service Content or User’s Content, the User is not authorized to, or cannot allow a third party to:
The User represents and warrants that she or he retains ownership of all of his intellectual property rights in the User Content or that this User Content is subject to a license granted to the User by a third party holding these rights, under conditions allowing the User to freely use and/or transfer these elements for the purpose of using the Service, under the conditions described in the Terms and Conditions. GlomCon does not claim ownership of the User Content.
The User holds GlomCon harmless from all claims or actions brought by third parties on the grounds of an infringement of their rights, including, without limitation, publicity rights, copyrights, trademark and/or other intellectual property rights or privacy rights in the User Content.
By using the Service, the User represents and warrants that she or he has the legal right and capacity to enter into these Terms of Use in the User’s jurisdiction.
User warrants to be at least 18 years of age or older, or possess legal parental or guardian consent, and is fully competent, to use the Service and to enter into and comply with these Terms of Use.
Persons aged 17 years old or less are not authorized to access the Service.
User may not post content which includes, but is not limited to: (i) sexually explicit materials; (ii) obscene, misleading, libelous, slanderous, violent, hateful and/or unlawful content or profanity; (iii) content that infringes upon the rights of any third party, including copyright, trademark, privacy, publicity or other personal or proprietary right, or that is deceptive or fraudulent; (iv) content that promotes the use or sale of illegal or regulated substances, tobacco products, ammunition and/or firearms; and (v) gambling, including without limitation, any online casino, sports books, bingo or poker (“Objectionable Content”)via the Service.
User may not defame, stalk, bully, abuse, harass, threaten, impersonate or intimidate people or entities and must not post private or confidential information via the Service, including, without limitation, the User or any other person's credit card information, social security or alternate national identity numbers, non-public phone numbers or non-public email addresses.
User must not create accounts with the Service through unauthorized means, including but not limited to, by using an automated device, script, bot, spider, crawler or scraper.
User must not attempt to restrict another User from using or enjoying the Service and must not encourage or facilitate violations of these Terms of Service.
User may only make non-commercial uses of the Service and Service Content. Use of Service or the Service Content for any commercial, public or political purpose is strictly prohibited. Prohibited activities include, but are not limited to: (1) activities that are illegal or fraudulent; (2) use that inaccurately implies endorsement, approval, or sponsorship by GlomCon (or any individual officer or employee of GlomCon); (3) use that can be confused with official communications of <customer name> or its officers or employees; and (4) print or electronic mass mailings (sometimes known as "spamming"), solicitations for commercial services.
In order to ensure the Community Website provides the best experience possible for everyone, if a User sees any inappropriate content, she or he must use the “Report as offensive” feature found under each post.
GlomCon has no general obligation to monitor User Content nor to investigate whether facts or circumstances are revealing illicit activities. GlomCon has set up a reporting tool allowing any User to notify illegal, abusive and harmful content.
The knowledge of such content is deemed effective when the hosting provider is notified of following:
If a User Content is reported, GlomCon reserves the right to withdraw the reported content and/or suspend or terminate the User Account of the User having originally published the reported content in the conditions set forth in Article 11.2.
At any time, the User may delete its User Account by contacting GlomCon at the address or email address mentioned in Article 15.
Deletion is effective immediately and all the data collected upon the subscription as well as the content published by the User on the Community Website is deleted after a period of 7 days.
GlomCon retains the right to suspend User’s access to the Service to make all investigations necessary following a report made pursuant to Article 10 or in case of presumed breach of Terms of Use which may be remediated. The User whose User Account is suspended will be informed by GlomCon of such a decision by email. The User has the possibility send an email to GlomCon to obtain additional information on the reasons for the suspension as well as to provide explanations and/or any element in order to demonstrate that the breach has been remediated. If the violation of Terms of Use is not remedied within 7 days from suspension notification, GlomCon reserves the right to terminate the applicable User’s Account and right to use the Service, in addition to any other rights or remedies available.
GlomCon will delete inactive accounts after a continuous period of two year the User has not used the Community Website. The User will be informed by email of the deletion of his or her account subject to prior notice of one week allowing the User to object to such deletion.
By using the Service, User’s personal data, in the meaning of Data Protection Law, may be collected and processed by GlomCon, in compliance with GlomCon’s Privacy Policy and the Cookie Policy, (collectively, “Privacy Policies”).
GlomCon will treat User Content as confidential information in accordance in accordance with these Terms of Use and the Privacy Policies.
GlomCon is not responsible for the User’s device compatibility nor if the User is unable to connect due to any technical problem related to the Internet network or a failure in the User's computer facilities and equipment.
GlomCon shall not be responsible for User’s System nor any problems arising from or related to User’s System or caused by the Internet. User is responsible for the security of the User System and the security of its access to and connection with the Services.
Insofar as it has not been reported in the conditions of Article 10, any document, information, data, or elements available via the Service, including User Content (“Information”) is provided without any guarantees, notably that the Information is comprehensive or accurate.
The User is solely responsible for the use of the Information and bears all the risks arising from your reliance on this Information. The Information is provided on the condition that the User can determine its interest for a specific purpose before use. Under no circumstances GlomCon accepts liability for injury arising from reliance on the said Information, its use or use of a product to which it refers.
The User is solely responsible for all User Content posted, and assumes all risks relating to its use by others and others’ reliance on its accuracy. The User acknowledges that, following the publication of the any content, its information will become accessible to all the Users on the Community Website and that as such, same information will be published, modified, translated, reproduced in any form and accessible, saved and reproduced by other Users and GlomCon. GlomCon will have no responsibility or liability in connection with the User Content.
GlomCon expressly excludes any liability for events of any kind that may occur during any meeting organized between Users within the use of the Services.
The Community Website may provide links to websites operated by third parties or other internet sources/networks, as well as data/information coming from third-party servers. GlomCon does not endorse or accept responsibility for the content or the use of third-party websites and cannot be held liable for any damage following or in relation with use or the fact of having trusted the content/data/results available on such third-party servers, external sources or internet sites.
If a User uses third-party sites or content from third-party servers, User does so solely at User’s own risk. Links do not imply that the Company is affiliated or associated with any linked site.
For any questions regarding the Terms of Use, especially use of the Service or any claim, please email [email protected]
The User can use these contact details for any technical support request.
Governing Law and jurisdiction. These Terms of Use, will be governed by the laws of the Unite States without regard to its conflicts of laws principles.
The User agree to resolve all disputes arising from the use of GlomCon services under the agreement by arbitration as the sole resolution method. The User can also submit a dispute to the Online Dispute Resolution platform proposed by the European Commission, which may be accessed at the following address: http://ec.europa.eu/consumers/odr/.
Change of Terms of Use. These Terms of Use are subject to change from time to time. Any changes will be posted to this page. Use of this Service or any Service Content after entering into force the new version of the Terms of Use will constitute the agreement to the modified Terms of Use. If the User disagrees with such modification of the Terms of Use, the User may terminate the Service and delete its User Account under the conditions set forth in Article 11.
Change of the Service. GlomCon may further develop or modify the Service or the Service Content only to improve its quality. The User will be informed of such development/modification as soon as it is implemented.
Severability; Entire Agreement. Except in the case of invalidity of an essential clause, if any provision of these Terms of Use is held to be invalid or unenforceable, that provision, to the extent unenforceable, shall be struck, and shall not affect the validity or enforceability of the remaining provisions. These Terms of Use, including the Privacy Policies, set forth the entire understanding and agreement between the User and GlomCon with respect to the subject matter hereof.
Convention of proof. Electronic documents exchanged by electronic means between the User and GlomCon shall be regarded as writings having the same probative force as writings on paper in the meaning of applicable law. They may constitute faithful and durable copies in accordance with applicable law, so that the User is invited to keep them.
Force majeure. In no case GlomCon may be held liable for any breach of its contractual obligations resulting from a force majeure event as defined in applicable law and related jurisprudence.
GlomCon – Privacy Policy
This Privacy Policy is edited by GlomCon, a nonprofit 501(c)(3) having its registered office at 667 Sequoia Valley Rd, Mill Valley, CA, USA and registered with the state of Pennsylvania under the number 7210162 (hereafter, the “Data Controller”).
The Data Controller offers a platform GlomCon Network – a community for patients, caregivers, an kidney disease specialists (hereafter, the “Platform”) to its users which have subscribed on the Platform and as such have a user account (hereafter, the “Users”). The Platform is available at the following url address network.glomcon.org
Data Controller uses a solution called “Hivebrite”, which enables the import and export of user lists and data, the management of content and events, the organization of emailing campaigns and opportunity research and sharing as well as the management of funds and contributions of any kind.
In this regard, the Data Controller collects and processes User’s personal data in accordance with the Privacy and Cookie policy.
The Data Controller is particularly aware and sensitive with regards to the respect of its Users privacy and personal data protection. The Data Controller commits to ensure the compliance of the processing it carries out as data controller in accordance with the Data Protection Law.
Data Protection Law is the California Consumer Privacy Act of 2018 and the EU Regulation n°2016/679 regarding data protection dated April 27, 2016 named General Data Protection Regulation or “GDPR”.
The Data Controller has put in place an appropriate privacy and cookie policy to be fully transparent on how the personal data of Users are processed within the use of the Platform and services provided.
This privacy policy is intended for the Users of the Platform of the Data Controller.
Date of last update: 2022/October/23.
1.1 When subscribing on the Platform
When subscribing to the Platform, the User is informed that its following personal data is collected for the purpose of creating a user account:
Mandatory data
Optional data:
The User is informed that it is not possible to access the Platform without providing the mandatory data strictly necessary to create an account and authenticate the User.
1.2 During the use of the Platform
The User may validly publish, at its own initiative, any content on the Platform which shall be kept by the Company:
The User is aware that when using the Platform, the User may decide to provide « sensitive data » within the meaning of Data Protection Law, for example, data revealing racial or ethnic origin, political opinions, religious or philosophical beliefs, concerning sexual orientation, etc. By providing such sensitive data, the User agrees to their processing by the Platform in the conditions set forth in this Privacy Policy.
The Data Controller and its subcontractors process personal data that are freely transferred by the User when accessing the services proposed by the Platform for the following purpose:
|
Purpose |
Legal basis |
|
Creation and management of a user account; |
According to options listed in GDPR, art.6
|
|
Providing the User with all functionalities of the Platform, meaning:
|
|
|
Management of data subjects rights according to the Personal Data Legislation. Storage of User personal data;
|
|
|
Management of transactions through the Platform;
|
|
|
Management of delinquencies and claims |
|
|
|
|
Making statistics in order:
|
|
|
Making statistics regarding the effective use of the Platform;
|
|
|
Making statistics regarding the different levels of activity on the Platform. |
|
|
Enable the synchronization of the User’s LinkedIn profile;
|
The Data Controller informs the User that the personal data related to the User Account is retained only during the length of the User’s subscription on the Platform.
Following the termination of said subscription, the data collected upon the subscription as well as the content published by the User on the Platform shall be deleted after a period of 7 days.
The Users’ data are stored in the European Economic Area (EEA) by the Data Controlle and its trusted service providers. However, depending on the processing, the Users’ data may also be transferred in a country outside the EEA, to our trusted service providers.
When transferring data outside the EEA, the Data Controller ensures that the data are transferred in a secured manner and with respect to the Data Protection Law. When the country where the data are transferred does not have a protection comparable to that of the EU, the Data Controller uses “appropriate or suitable safeguards”.
When the service providers to whom personal data are transferred, are located in the United States, these transfers are governed by the standard data protection clauses adopted by the Commission.
The Data Controller commits to process User’s personal data in compliance the Data Protection Law and undertake to, notably, respect the following principles:
The User is duly informed that it disposes at any time, depending on the legal basis of the processing, a right to access, to rectification, to erasure, to restriction of processing, to data portability, and to object.
When processing is based on User’s consent, the right to withdraw consent at any time, without affecting the lawfulness of the processing based on consent before its withdrawal.
The User can exercise its rights by sending an email to the following address
In addition, in the event the User considers that its rights have not been respected, the User of which the personal data is collected can lodge a complaint before the competent supervisory authority. For any additional information, you can review your rights on the websites of the competent authorities.
The competent supervisory authorities are listed on the following website:
http://ec.europa.eu/justice/article-29/structure/data-protection-authorities/index_en.htm.
The Data Controller informs the User that Hivebrite, as well as its subcontractors, uses a tracking technology on its terminal such as cookies whenever the User navigates on the Platform.
Our Website uses cookies. We use cookies to gather information about your computer for our services and to provide statistical information regarding the use of our Website. Such information will not identify you personally – it is statistical data about our visitors and their use of our Website. This statistical data does not identify any personal details whatsoever.
We may also gather information about your general Internet use by using a cookie file. Where used, these cookies are downloaded to your computer automatically. This cookie file is stored on the hard drive of your computer, as cookies contain information that is transferred to your computer’s hard drive. They help us to improve our Website, the service that we provide to you and the way we communicate to you.
All computers have the ability to decline cookies. This can be done by activating the setting on your browser which enables you to decline the cookies. Please note that should you choose to decline cookies, you may be unable to access particular parts of our Website.
This website uses cookies. We use cookies to personalise content and ads, to provide social media features and to analyse our traffic. We also share information about your use of our site with our social media, advertising and analytics partners who may combine it with other information that you’ve provided to them or that they’ve collected from your use of their services.
Cookies are small text files that can be used by websites to make a user's experience more efficient.
The law states that we can store cookies on your device if they are strictly necessary for the operation of this site. For all other types of cookies we need your permission.
This site uses different types of cookies. Some cookies are placed by third party services that appear on our pages.
You can at any time change or withdraw your consent from the Cookie Declaration on our website.
Learn more about who we are, how you can contact us and how we process personal data in our Privacy Policy.
Please state your consent ID and date when you contact us regarding your consent.
Your consent applies to the following domains: network.glomcon.org
Only authorized persons working for the Data Controller and, in some cases, its service providers, can access your personal data. The Data Controller makes its best effort to ensure that these groups of people remain as small as possible and maintain the confidentiality and security of User’s personal data.
The Data Controller also uses trusted service providers to carry out a set of operations on his behalf for hosting and payment services. The Data Controller can also use service providers in the tech industry, editors of specific tools integrated in the Platform for technical purposes.
The Data Controller only provides service providers with the information they need to perform the service and ask them not to use your personal data for any other purpose. The Data Controller does his best to ensure that all these trusted service providers only process the personal data on our documented instructions and provide sufficient guarantees, in particular in terms of confidentiality, expert knowledge, reliability and resources, to implement technical and organizational measures which will meet the requirements of the applicable legislation, including for the security of processing.
The Data Controller may be required to disclose or share your personal data to comply with a legal obligation, or to enforce or apply our terms of use/sale or any other conditions you have accepted; or to protect the rights, safety or property of GlomCon, its customers or employees.
List of the main service providers:
|
Service Provider |
Service |
You can consult the privacy policy by clicking on the following link: |
|
KIT UNITED
44 rue la fayette 75009 Paris France |
HIVEBRITE solution
|
https://hivebrite.com/privacy-policy
|
|
Stripe
510 Townsend Street San Francisco CA 94103, USA
|
Payment Service
|
https://stripe.com/fr/privacy
|
|
Paypal
21 rue Banque 75002 Paris France
|
Payment Service |
https://www.paypal.com/us/webapps/mpp/ua/privacy-full
|
|
Google Cloud Platform Gordon House, 4 Barrow St, Dublin, Ireland |
Hosting of all data and content produced / provided by the User, as well as images, profile pictures and backups |
https://cloud.google.com/security/privacy/
|
|
Amazon AWS 38 avenue John F. Kennedy, L-1855, Luxembourg |
|
|
|
Sentry 132 Hawthorne Street San Francisco, CA 94107 USA
|
Production and storage of error logs enabling our developers to correct the code |
https://sentry.io/privacy/ |
|
Sendgrid 375 Beale Street, Suite 300, San Francisco, CA 94105 USA |
Sending of emails from the Platform |
https://api.sendgrid.com/privacy.html |
|
Hivebrite, Inc. 16 Nassau St, New York, NY 10038, USA |
Customer support for the Platform |
https://hivebrite.com/privacy-policy
|
Our Website uses cookies. We use cookies to gather information about your computer for our services and to provide statistical information regarding the use of our Website. Such information will not identify you personally – it is statistical data about our visitors and their use of our Website. This statistical data does not identify any personal details whatsoever.
We may also gather information about your general Internet use by using a cookie file. Where used, these cookies are downloaded to your computer automatically. This cookie file is stored on the hard drive of your computer, as cookies contain information that is transferred to your computer’s hard drive. They help us to improve our Website, the service that we provide to you and the way we communicate to you.
All computers have the ability to decline cookies. This can be done by activating the setting on your browser which enables you to decline the cookies. Please note that should you choose to decline cookies, you may be unable to access particular parts of our Website.
This website uses cookies. We use cookies to personalise content and ads, to provide social media features and to analyse our traffic. We also share information about your use of our site with our social media, advertising and analytics partners who may combine it with other information that you’ve provided to them or that they’ve collected from your use of their services.
Cookies are small text files that can be used by websites to make a user's experience more efficient.
The law states that we can store cookies on your device if they are strictly necessary for the operation of this site. For all other types of cookies we need your permission.
This site uses different types of cookies. Some cookies are placed by third party services that appear on our pages.
You can at any time change or withdraw your consent from the Cookie Declaration on our website.
Learn more about who we are, how you can contact us and how we process personal data in our Privacy Policy.
Please state your consent ID and date when you contact us regarding your consent.
Your consent applies to the following domains: hivebrite.com
