PRIVACY POLICY

LAST UPDATED: May 15, 2024

PRIVACY POLICY

The International Society of Glomerular Disease (“ISGD,” “we,” or “us”) wants you to be familiar with how we collect, use, and disclose information. This Privacy Policy describes our practices in connection with information that we collect through:

• Websites operated by us from which you are accessing this Privacy Policy (“Websites”);
• Our social media pages from which you are accessing this Privacy Policy (“Social Media Pages”);
• HTML-formatted email messages that we send to you that link to this Privacy Policy or other communications with you; and
• Offline business interactions you have with us.

Collectively, we refer to the Websites, Social Media Pages, emails, and offline business interactions as the “Services.”

Personal Information

“Personal Information” is information that identifies you as an individual or relates to an identifiable individual. The Services collect Personal Information, including:

• Name
• Telephone number
• Email address and mailing address
• Job title
• Institution/company/organization
• Your areas of interest or expertise in relation to glomerular disease, when you choose to share those with us
• Account information, such as username and password, when you choose to create an account on our ISGD Community Platform
• Any content you choose to post on our ISGD Community Platform, such as event listings, blog posts, or media content
• Payment data, such as when you choose to make a donation
• IP address (we may also derive your approximate location from your IP address)
•  

Collection of Personal Information

We and our service providers collect Personal Information in a variety of ways, including:

Through the Services.

• We collect Personal Information through the Services, for example, when you join our mailing list, become a member, or contact us with questions.

From Other Sources.

• We receive your Personal Information from other sources, for example, social media platforms, publicly available websites or databases, or partner non-profit organizations.
• If you connect your social media account to your Services account, you will share certain Personal Information from your social media account with us, for example, your name, email address, photo, list of social media contacts, and any other information that may be or you make accessible to us when you connect your social media account to your Services account.

We need to collect Personal Information to provide the requested Services to you. If you do not provide the information requested, we may not be able to provide the Services. If you disclose any Personal Information relating to other people to us or to our service providers in connection with the Services, you represent that you have the authority to do so and to permit us to use the information in accordance with this Privacy Policy.

 

Use of Personal Information

We and our service providers use Personal Information for the following purposes:

Providing the functionality of the Services and fulfilling your requests.

• To provide the Services’ functionality to you, such as arranging access to your ISGD Community Platform account and managing your membership.
• To respond to your inquiries and fulfill your requests, such as when you contact us via one of our online contact forms, send us questions, or request information about our organization’s mission and services.
• To complete your transactions and verify your information.
• To send administrative information to you, such as changes to our terms, conditions, and policies.
• To allow you to send messages to another person through the Services if you choose to do so.

We will engage in these activities to manage our contractual relationship with you and/or to comply with a legal obligation.  

Providing you with marketing materials and facilitating social sharing.

• To send you news and updates, including marketing related emails, with information about our events, committees, and organization.
• To facilitate social sharing functionality that you choose to use.

We will engage in this activity with your consent or where we have a legitimate interest.

 

Analyzing Personal Information for business reporting and providing personalized services.

• To analyze or predict our users’ preferences in order to prepare aggregated trend reports on how our digital content is used, so we can improve our Services.
• To better understand your interests and preferences, so that we can personalize our interactions with you and provide you with information and/or offers tailored to your interests.
• To better understand your preferences so that we can deliver content via our Services that we believe will be relevant and interesting to you.

 

We will provide personalized services based on our legitimate interests, and with your consent to the extent required by applicable law.

 

Allowing you to participate in sweepstakes, contests, or other promotions.

We may offer you the opportunity to participate in a sweepstakes, contest, or other promotion.

Some of these promotions have additional rules containing information about how we will use and disclose your Personal Information. Please read those additional rules before choosing to participate. 

We use this information to manage our contractual relationship with you.

 

Aggregating and/or anonymizing Personal Information.

• We may aggregate and/or anonymize Personal Information so that it will no longer be considered Personal Information. We do so to generate other data for our use, which we may use and disclose for any purpose, as it no longer identifies you or any other individual.

 

Accomplishing our business purposes.

• For data analysis, for example, to improve the efficiency of our Services.
• For audits, to verify that our internal processes function as intended and to address legal, regulatory, or contractual requirements.
• For fraud prevention and fraud security monitoring purposes, for example, to detect and prevent cyberattacks or attempts to commit identity theft.
• For developing new services and organizing events.
• For enhancing, improving, repairing, maintaining, or modifying our current services, as well as undertaking quality and safety assurance measures.
• For identifying usage trends, for example, understanding which parts of our Services are of most interest to users.
• For determining the effectiveness of our promotional campaigns, so that we can adapt our campaigns to the needs and interests of our users.
• For operating and expanding our business activities, for example, understanding which parts of our Services are of most interest to our users so we can focus our energies on meeting our users’ interests.

 

We engage in these activities to manage our contractual relationship with you, to comply with a legal obligation, and/or based on our legitimate interest.

 

Disclosure of Personal Information

We disclose Personal Information:

To our third-party service providers, to facilitate services they provide to us.

• These can include providers of services such as website hosting, data analysis, payment processing, information technology and related infrastructure provision, marketing providers, professional advisors, email delivery, auditing, and other services.

To other organizations we may partner with to support our mission, such as for joint projects or events.

By using the Services, you may elect to disclose Personal Information.

• On message boards, chat, profile pages, blogs, and other services to which you are able to post information and content (including, without limitation, our Social Media Pages). Please note that any information you post or disclose through these services will become public and may be available to other users and the general public.
• Through your social sharing activity. When you connect your Services account to your social media account, you will share information with your friends associated with your social media account, with other users, and with your social media account provider. By doing so, you authorize us to facilitate this sharing of information, and you understand that the use of shared information will be governed by the social media provider’s privacy policy.

 

Other Uses and Disclosures 

We also use and disclose your Personal Information as necessary or appropriate, in particular when we have a legal obligation or legitimate interest to do so:

• To comply with applicable law and regulations.
• This may include laws outside your country of residence.
• To cooperate with public and government authorities.
• To respond to a request or to provide information we believe is necessary or appropriate.
• These can include authorities outside your country of residence.
• To cooperate with law enforcement.
• For example, when we respond to law enforcement requests and orders or provide information that we believe is important.
• For other legal reasons.
• To enforce our terms and conditions; and
• To protect our rights, privacy, safety, or property, and/or that of our affiliates, you, or others.
• In connection with a sale or business transaction.
• We have a legitimate interest in disclosing or transferring your Personal Information to a third party in the event of any reorganization, merger, sale, joint venture, assignment, transfer, or other disposition of all or any portion of our business, assets, or stock (including in connection with any bankruptcy or similar proceedings).

Other Information

“Other Information” is any information that does not reveal your specific identity or does not directly relate to an identifiable individual. We and our service providers may collect Other Information in a variety of ways, including:

Your browser or device.

• Certain information is collected by most browsers or automatically through your device, such as your Media Access Control (MAC) address, computer type (Windows or Mac), screen resolution, operating system name and version, device manufacturer and model, language, Internet browser type and version and the name and version of the Services you are using. We use this information to ensure that the Services function properly. 
  
• Cookies are pieces of information stored directly on your computer. Cookies allow us to collect such information as browser type, time spent on the Services, pages visited, language preferences, and traffic data. We use the information for security purposes, to facilitate navigation, to display information more effectively, and to personalize your experience. We also gather statistical information about use of the Services in order to continually improve their design and functionality, understand how they are used, and assist us with resolving questions regarding them. We do not currently respond to browser do-not-track signals.
• If you do not want information collected through the use of cookies, most browsers allow you to automatically decline cookies or be given the choice of declining or accepting particular cookies from a particular website. You may also wish to refer to http://www.allaboutcookies.org/manage-cookies/index.html. If, however, you do not accept cookies, you may experience some inconvenience in your use of the Services.
• Please refer to our Cookie Policy for further details.

Pixel tags and other similar technologies.

• Pixel tags. Pixel tags (also known as web beacons and clear GIFs) may be used to, among other things, track the actions of users of the Services (including email recipients), measure the success of our marketing campaigns, and compile statistics about usage of the Services and response rates.
• Analytics. We use analytics services, which employ cookies and similar technologies to collect and analyze information about use of the Services and report on activities and trends. These services may also collect information regarding the use of other websites, apps, and online resources.

Uses and Disclosures of Other Information

We may use and disclose Other Information for any purpose, except where we are required to do otherwise under applicable law. If we are required to treat Other Information as Personal Information under applicable law, we may use and disclose it for the purposes for which we use and disclose Personal Information as detailed in this Policy. In some instances, we may combine Other Information with Personal Information. If we do, we will treat the combined information as Personal Information as long as it is combined.

Security

We seek to use reasonable organizational, technical, and administrative measures to protect Personal Information within our organization. Unfortunately, no data transmission or storage system can be guaranteed to be 100% secure. If you have reason to believe that your interaction with us is no longer secure, please immediately notify us in accordance with the “Contacting Us” section below.

Choices and Rights

Your choices regarding our use and disclosure of your Personal Information

We give you choices regarding our use and disclosure of your Personal Information for marketing purposes. You may opt out from:

• Receiving marketing-related emails from us. If you no longer want to receive marketing related emails from us on a going-forward basis, you may opt out by using the opt-out/”unsubscribe” link in each such email, or by contacting us at privacy@is-gd.org.

We will try to comply with your request as soon as reasonably practicable. Please note that if you opt out of receiving marketing-related emails from us, we may still send you important administrative messages, from which you cannot opt out.

Your Personal Information Rights

If you would like to request to access, correct, update, suppress, restrict, or delete Personal Information, object to or opt out of the processing of Personal Information, or if you would like to request to receive a copy of your Personal Information for purposes of transmitting it to another company (to the extent these rights are provided to you by applicable law), you may contact us in accordance with the “Contacting Us” section below. We will respond to your request consistent with applicable law.

In your request, please make clear what Personal Information you would like to have changed or whether you would like to have your Personal Information suppressed from our database. For your protection, we may only implement requests with respect to the Personal Information associated with the particular email address that you use to send us your request, and we may need to verify your identity before implementing your request. We will try to comply with your request as soon as reasonably practicable.

Please note that we may need to retain certain information for recordkeeping purposes and/or to complete any transactions that you began prior to requesting a change or deletion (e.g., when you make a payment, you may not be able to change or delete the Personal Information provided until after the completion of such payment).

FOR EEA/UK/SWISS RESIDENTS: You may also lodge a complaint with a data protection authority for your country or region where you have your habitual residence or place of work or where an alleged infringement of applicable data protection law occurs. A list of EEA data protection authorities is available at https://ec.europa.eu/newsroom/article29/items/612080, and the UK Information Commissioner’s Office’s contact details can be found https://ico.org.uk/global/contact-us/. The Swiss authority is the FDIC, at www.edoeb.admin.ch.

Retention Period

We retain Personal Information for as long as needed or permitted in light of the purpose(s) for which it was obtained and consistent with applicable law. The criteria used to determine our retention periods include:

• The length of time we have an ongoing relationship with you and provide the Services to you, for example, for as long as you have an account with us or keep using the Services;
• Whether there is a legal obligation to which we are subject, for example, certain laws require us to keep records of your transactions for a certain period of time before we can delete them; and
• Whether retention is advisable in light of our legal position, such as in regard to applicable statutes of limitations, litigation, or regulatory investigations.

 

Third Party Services

This Privacy Policy does not address, and we are not responsible for, the privacy, information, or other practices of any third parties, including any third party operating any website or service to which the Services link. The inclusion of a link on the Services does not imply endorsement of the linked site or service by us or by our affiliates.

In addition, we are not responsible for the information collection, use, disclosure, or security policies or practices of other organizations, such as Facebook, Apple, Google, Microsoft, RIM, or any other social media platform provider, operating system provider, wireless service provider, or device manufacturer, including with respect to any Personal Information you disclose to other organizations through or in connection with our Social Media Pages.

Use of Services by Minors

The Services are not directed to individuals under the age of sixteen (16), and we do not knowingly collect Personal Information from individuals under 16.

Jurisdiction and Cross-Border Transfer

Your Personal Information may be stored and processed in any country where we have facilities or in which we engage service providers, and by using the Services you understand that your information will be transferred to countries outside of your country of residence, including the United States, which may have data protection rules that are different from those of your country. In certain circumstances, courts, law enforcement agencies, regulatory agencies, or security authorities in those other countries may be entitled to access your Personal Information.

ADDITIONAL INFORMATION REGARDING THE EEA/UK/SWITZERLAND:

Some countries outside of the EEA/UK/Switzerland are recognized by the European Commission, the UK government, and/or the Swiss government as providing an adequate level of data protection according to EEA/UK/Swiss standards: the list of the EEA’s adequate jurisdictions is available here, the list of the UK’s adequate jurisdictions is available here, and the list of Switzerland’s adequate jurisdictions is available here. For transfers from the EEA, the UK, and/or Switzerland to countries not considered adequate by the European Commission, the UK government, or the Swiss government (as applicable), we have put in place adequate measures, such as standard contractual clauses adopted by the relevant authority to protect your Personal Information. You may obtain a copy of these measures by contacting us in accordance with the “Contacting Us” section below.

Sensitive Information

Unless we request it, we ask that you not send us, and you not disclose, any sensitive Personal Information (e.g., social security numbers, information related to racial or ethnic origin, political opinions, religion or other beliefs, health, biometrics or genetic characteristics, criminal background, or trade union membership) on or through the Services or otherwise to us.

Third Party Payment Services

The Services may provide functionality allowing you to make payments to us using third-party payment services with which you have created your own account. When you use such a service to make a payment to us, your Personal Information will be collected by such third party, not by us, and it will be subject to the third party’s privacy policy, rather than this Privacy Policy. We have no control over, and are not responsible for, this third party’s collection, use, and disclosure of your Personal Information.

Updates to This Privacy Policy

The “Last Updated” legend at the top of this Privacy Policy indicates when this Privacy Policy was last revised. Any changes will become effective when we post the revised Privacy Policy on the Services.

Contacting Us

The International Society of Glomerular Disease, located at 123 Main St. #60335, Florence, MA 01062 USA, is the company responsible for collection, use, and disclosure of your Personal Information under this Privacy Policy.

If you have any questions about this Privacy Policy, please contact us at privacy@is-gd.org or 123 Main St. #60335, Florence, MA 01062 USA.

Because email communications are not always secure, please do not include credit card or other sensitive information in your emails to us.

ADDITIONAL INFORMATION REGARDING THE EU, UK, AND SWITZERLAND:

Pursuant to Article 27 of the General Data Protection Regulation (GDPR), the International Society of Glomerular Disease has appointed European Data Protection Office (EDPO) as its GDPR Representative in the EU. You can contact EDPO regarding matters pertaining to the GDPR:

-by using EDPO’s online request form: https://edpo.com/gdpr-data-request/
-by writing to EDPO at Avenue Huart Hamoir 71, 1030 Brussels, Belgium

Pursuant to Article 27 of the UK GDPR, the International Society of Glomerular Disease has appointed EDPO UK Ltd as its UK GDPR representative in the UK. You can contact EDPO UK regarding matters pertaining to the UK GDPR:

- by using EDPO’s online request form: https://edpo.com/uk-gdpr-data-request/
- by writing to EDPO UK at 8 Northumberland Avenue, London WC2N 5BY, United Kingdom

Pursuant to Article 14 of the FADP, the International Society of Glomerular Disease has appointed EDPO Switzerland as its Representative in Switzerland. You can contact EDPO Switzerland regarding matters pertaining to the FADP:

-by using EDPO Switzerland's online request form: https://edpo.com/swiss-data-request/
-by writing to EDPO Switzerland at Rue de Lausanne 37, 1201 Geneva, Switzerland