PRIVACY POLICY

UPDATED: October 27, 2020

We are the Lobular Breast Cancer Alliance, a charitable project that is fiscally sponsored by the nonprofit corporation Social and Environmental Entrepreneurs (SEE), Inc., an incubator and back-office resource for innovative, public-interest programs. We envision a world in which invasive lobular breast cancer (“ILC”) is found early, treated effectively, and eradicated permanently. We do not give medical advice or professional referrals, and urge you to confer with your own medical provider regarding ILC or any other illness, treatment or treatment resource.

This privacy policy (“Policy”) applies to all information collected through your communications with us, whether electronic, written, or oral; information collected through the lobularbreastcancer.org website or any other of our websites or applications that reference this Policy, information collected through any related products and services, and any other information about you that we may collect offline or receive from third parties (collectively, “Website” and “Services”).

AUTOMATIC COLLECTION OF INFORMATION

When you open the Website, our servers automatically record information that your browser sends. This data may include information such as your device’s IP address, browser type and version, operating system type and version, language preferences or the webpage you were visiting before you came to the Website and Services, pages of the Website and Services that you visit, the time spent on those pages, information you search for on the Website, access times and dates, and other statistics.  Information collected automatically is used only to identify potential cases of abuse and establish statistical information regarding the usage and traffic of the Website and Services. This statistical information is not otherwise aggregated in such a way that would identify any particular user of the system. We also use Google Analytics, which uses cookies and similar technologies to collect and analyze information about use of the websites and report on activities and trends.

COLLECTION OF PERSONAL INFORMATION

You can access and use the Website and Services without telling us who you are or revealing any information by which someone could identify you as a specific, identifiable individual. If, however, you wish to use some of the features on the Website, you may be asked to provide certain Personal Information (for example, your name, mailing address and/or e-mail address). We receive and store any information you knowingly provide to us when you fill any online form on the Website or otherwise communicate with us. This information may include the following:

– Personal details such as name, country of residence, etc.

– Contact information such as email address, postal and/or residential address, etc.

– If you volunteer or request to participate in certain activities, such as educational events, support groups, advocacy events, fundraisers, etc., we may collect information relating to your experience, work, and volunteer history, as well as your relationship to ILC or other forms of cancer, although you are not required to provide any medical history.

– Any other materials you willingly submit to us such as articles, images, feedback, etc.

– If you make a donation to us, we will collect Personal Information from you that may include: your name, address, telephone number, and/or e-mail address, so that we can send you a receipt and thank you for your donation. We or our third-party payment processing service also may collect limited financial information to process your donations.

Some of the information we collect is directly from you via the Website and Services. However, we may also collect Personal Information about you from other sources such as public databases or research services. You can choose not to provide us with your Personal Information, but then you may not be able to take advantage of some of the features on the Website.

If you disclose Personal Information relating to other people to us, you represent that you have the authority to do so and to permit us to use the information in accordance with this Policy. Do not provide us any Personal Information regarding others unless you have such authority.

 USE AND PROCESSING OF COLLECTED INFORMATION

In order to make the Website and Services available to you, to conduct fundraising activities for our charitable purposes, to find suitable opportunities for our volunteers to further our charitable purposes, or to meet a legal obligation, we need to collect and use certain Personal Information. If you do not provide the information that we request, we may not be able to provide you with some of the Services that you request. Any of the information we collect from you may be used for the following purposes related to the Lobular Breast Cancer Alliance:

– Send newsletters and other content or materials about ILC or our nonprofit activities

– Develop educational, advocacy and other materials relating to ILC, including personal articles and testimonials (but we would not include your Personal Information in any such article or testimonial without your consent)

– Send fundraising communications and solicitations

– Acknowledge donations we receive, including acknowledgments to the donor and to third persons (or others designated by the donor) in whose honor or memory donations have been made

– Communicate with volunteers and, with their consent, introduce volunteers to each other who are working on related matters or who wish to meet others to participate in advocacy, support or other group activities related to cancer, including ILC

– Organize or participate in events and other activities

– Respond to legal requests and prevent harm

– Run and operate the Website and Services

Processing your Personal Information depends on how you interact with the Website and Services, where you are located in the world and if one of the following applies: (i) you have given your consent for one or more specific purposes; (ii) provision of information is necessary for the performance of an agreement with you and/or for any pre-contractual obligations thereof; (iii) processing is necessary for compliance with a legal obligation to which you are subject; (iv) processing is related to a task that is carried out in the public interest or in the exercise of official authority vested in us; (v) processing is necessary for the purposes of the legitimate interests pursued by us or by a third party.

Note that under the laws of some jurisdictions, we may be allowed to process information until you object to such processing (by opting out), without having to rely on consent or any other of the following legal bases below.

EMAIL MARKETING

We offer electronic newsletters to which you may voluntarily subscribe at any time. We are committed to keeping your e-mail address confidential and will not disclose your email address to any third parties except as in the information, use and processing section or for the purposes of utilizing a third party provider to send such emails. We will maintain the information sent via e-mail in accordance with applicable laws and regulations.

In compliance with the CAN-SPAM Act, all e-mails sent from us will clearly state who the e-mail is from and provide clear information on how to contact the sender. You may choose to stop receiving our newsletter or solicitation emails by following the unsubscribe instructions included in these emails or by contacting us.

DISCLOSURE OF INFORMATION

Depending on the requested Services or as necessary to complete any transaction or provide any service you have requested, or for purposes of our charitable solicitations, we may share your information with third parties that work with us, and any affiliates and subsidiaries we rely upon to assist in the operation of the Website or Services or in our fundraising activities. We do not authorize these service providers to use or disclose your information except as necessary to perform services on our behalf or to comply with legal requirements.

We will disclose any Personal Information we collect, use or receive if required or permitted by law, such as to comply with a subpoena, or similar legal process, and when we believe in good faith that disclosure is necessary to protect our rights, protect your safety or the safety of others, investigate fraud, or respond to a government request.

If management of the Lobular Breast Cancer Alliance charitable project determines that it would be more efficient for the project to incorporate itself into a separate nonprofit entity or to be fiscally sponsored by another organization, or in the event we or the project go through another form of business transition, your Personal Information will likely be among the assets transferred, subject to the legal requirement that the recipient be a not-for-profit organization engaged in activities reasonably consistent with our own nonprofit purposes.

RETENTION OF INFORMATION

We will retain and use your Personal Information for the period necessary for its uses as described in this Polity, to comply with our legal obligations, resolve disputes, and enforce our agreements unless a longer retention period is required or permitted by law. We may use any aggregated data derived from or incorporating your Personal Information after you update or delete it, but not in a manner that would identify you personally. Once the retention period expires, Personal Information will be deleted. Therefore, any right to access, to erasure, to rectification or to data portability cannot be enforced after the expiration of the retention period.

LINKS TO OTHER RESOURCES

The Website and Services contain links to other resources that are not owned or controlled by us. For example, we may have links to Facebook, Twitter and other social media platforms. Please be aware that if you link to use social media through our Website, certain Personal Information from your social media account may be shared with us, which may include Personal Information that is part of your profile or your friends’ profiles, and if you use a “like” button or use other social media features while visiting our website, those social media companies may collect information about you. Please note that any information you post within public forums or social media pages may become public and may be read, collected, and used by anyone. Please exercise caution when deciding whether to disclose your Personal Information in these forums. Your interactions with social media companies and the use of their features are governed by their privacy policies.

We are not responsible for the privacy practices of such other resources or third parties. We encourage you to be aware when you leave the Website and Services and to read the privacy statements of every resource that may collect Personal Information.

THE RIGHTS OF USERS

You can request that we cease processing and erase personal data we hold about you. This does not include any data we are obliged to keep for administrative, legal, or security purposes, or that is needed to fulfill or preserve record of any agreement with you or to perform any Service you have requested.

PRIVACY OF CHILDREN

We do not knowingly collect any Personal Information from children under the age of 18. If you are under the age of 18, please do not submit any Personal Information through the Website and Services. We encourage parents and legal guardians to monitor their children’s Internet usage and to help enforce this Policy by instructing their children never to provide Personal Information through the Website and Services without their permission. If you have reason to believe that a child under the age of 18 has provided Personal Information to us through the Website and Services, please contact us. You must also be at least 16 years of age to consent to the processing of your Personal Information in your country (in some countries we may allow your parent or guardian to do so on your behalf).

COOKIES

The Website and Services use “cookies” to help personalize your online experience. A cookie is a text file that is placed on your hard disk by a web page server. Cookies cannot be used to run programs or deliver viruses to your computer. Cookies are uniquely assigned to you, and can only be read by a web server in the domain that issued the cookie to you.

We may use cookies to collect, store, and track information for statistical purposes to operate the Website and Services. You have the ability to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. If you choose to decline cookies, you may not be able to fully experience the features of the Website and Services. To learn more about cookies and how to manage them, visit internetcookies.org.

PIXEL TAGS

Pixel tags (also known as web beacons and clear GIFs) may be used to, among other things, track the online 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.

DO NOT TRACK SIGNALS

Some browsers incorporate a Do Not Track feature that signals to websites you visit that you do not want to have your online activity tracked. How browsers communicate the Do Not Track signal is not yet uniform. As a result, the Website and Services are not yet set up to interpret or respond to Do Not Track signals communicated by your browser.

INFORMATION SECURITY

We endeavor to maintain reasonable administrative, technical, and physical safeguards in an effort to protect against unauthorized access, use, modification, and disclosure of Personal Information in our control and custody. However, no data transmission over the Internet or wireless network can be guaranteed. Therefore, while we strive to protect your Personal Information, you acknowledge that (i) there are security and privacy limitations of the Internet which are beyond our control; (ii) the security, integrity, and privacy of any and all information and data exchanged between you and the Website and Services cannot be guaranteed; and (iii) any such information and data may be viewed or tampered with in transit by a third party, despite best efforts.

DATA SUBJECT TO U.S. LAWS

We are headquartered in the United States, where our servers and databases are controlled and operated. In certain circumstances, courts, law enforcement agencies, regulatory agencies or security authorities may be legally entitled to access your Personal Information.

DATA PROTECTION RIGHTS FOR RESIDENTS OF THE EUROPEAN ECONOMIC AREA

If you are a resident of the European Economic Area (EEA), you have certain data protection rights and we aim to take reasonable steps to allow you to correct, amend, delete, or limit the use of your Personal Information. If you wish to be informed what Personal Information we hold about you and if you want it to be removed from our systems, please contact us. In certain circumstances, you have the following data protection rights:

– You have the right to request access to your Personal Information that we store and have the ability to access your Personal Information.

– You have the right to request that we correct any Personal Information you believe is inaccurate. You also have the right to request us to complete the Personal Information you believe is incomplete.

– You have the right to request the erasure of your Personal Information under certain conditions of this Policy.

– You have the right to object to our processing of your Personal Information.

– You have the right to seek restrictions on the processing of your Personal Information. When you restrict the processing of your Personal Information, we may store it but will not process it further.

– You have the right to be provided with a copy of the information we have on you in a structured, machine-readable and commonly used format.

– You also have the right to withdraw your consent at any time where we relied on your consent to process your Personal Information.

– You have the right to complain to a Data Protection Authority about our collection and use of your Personal Information. For more information, please contact your local data protection authority in the European Economic Area (EEA).

HOW TO EXERCISE YOUR RIGHTS

Any requests to exercise your rights under this Policy can be directed to us through the contact details provided in this document. Your request must provide sufficient information that allows us to verify that you are the person you are claiming to be or that you are the authorized representative of such person. You must include sufficient details to allow us to properly understand the request and respond to it. We cannot respond to your request or provide you with Personal Information unless we first verify your identity or authority to make such a request and confirm that the Personal Information relates to you.

CHANGES AND AMENDMENTS

We reserve the right to modify this Policy or its terms relating to the Website and Services from time to time in our discretion and will notify you of any material changes to the way in which we treat Personal Information. When we do, we will revise the updated date at the top of this page. We may also provide notice to you in other ways in our discretion, such as through contact information you have provided. Any updated version of this Policy will be effective immediately upon the posting of the revised Policy unless otherwise specified. Your continued use of the Website and Services after the effective date of the revised Policy (or such other act specified at that time) will constitute your consent to those changes.

CONTACTING US

If you would like to contact us to understand more about this Policy or wish to contact us concerning any matter relating to individual rights and your Personal Information, you may send an email to info@lobularbreastcancer.org.