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Effective Date: 8/16/2024

The National Ovarian Cancer Coalition (“NOCC,” “we,” “us,” or “our”) is committed to protecting your personal information. This Privacy Policy (“Privacy Policy” or “policy”) discloses the privacy practices of the National Ovarian Cancer Coalition. It applies solely to information collected by NOCC through its patient and caregiver support programs and financial support programs (collectively “NOCC programs”), except where stated otherwise. While NOCC is not a HIPAA Covered Entity or Business Associate, we are committed to ensuring patient privacy by applicable laws and industry best practices. By using the NOCC programs, you acknowledge you have read and understood the terms and conditions of this policy. If you do not agree to the terms and conditions of this policy, please do not use the NOCC programs. Your continued use of the NOCC Website after posting changes to our Privacy Policy will signify your acceptance of those changes. If you have any questions about this Privacy Policy and Security Statement and the practices of the Website or the NOCC, please get in touch with us at nocc@ovarian.org.

Information Collection
The NOCC assists in the NOCC support programs and collects from patients certain individually identifiable information (“personal information”), including:

  • Contact information;
  • Demographic information;
  • Protected health information, such as health insurance and other benefit information, financial status, medical information, and employment information;
  • Upon completion of service delivery to a patient through a NOCC program, the patient may be invited to Share Your Story. This is a voluntary opportunity offered to each patient and has no bearing on the delivery of services to a patient through NOCC programs.
  • Personal information is collected through Satisfaction Evaluation with an option to Share Your Story specifically to be publicly shared and demonstrate program impact for patients and their families. Only stories and personal information of patients who have provided authorization to NOCC are shared publicly.
  • Periodically, NOCC conducts follow-ups with patients served by NOCC programs to ask them questions about the services they receive from NOCC and their medical and insurance providers. These responses help NOCC understand what matters to the patients we assist and evaluate how our services have impacted patients receiving the services, enabling us to serve as an effective voice for change in the healthcare system. Voluntary survey and program evaluation participation does not affect the delivery of services to patients through NOCC programs. Survey responses are aggregated for public reporting, and no personal information is shared publicly.

Information Use
NOCC uses the information collected from patients or their authorized representatives to:

  • Provide assistance through its patient and caregiver support programs and financial support programs,
  • Respond to patients and their representatives to resolve issues presented by and for patients,
  • Send informational communications about NOCC patient programs, educational resources, and upcoming events
  • Solicit responses and feedback to voluntary patient and caregiver surveys as part of NOCC’s ongoing program satisfaction
  • And as otherwise permitted by applicable law.

It is the policy of NOCC that patients’ personal information, including protected health information, may only be used after authorization by patients or their representatives, as follows:

  1. By NOCC and its representatives to provide services and support to patients seeking assistance from and enrolled in NOCC programs, including those administered by NOCC as a service provider, to respond to applications for assistance and resolve issues
    presented by patients seeking assistance from NOCC. Representatives may include NOCC employees, both permanent and temporary, directors, officers, NOCC legal counsel, and contracted third-party service provider organizations.
  2. In the NOCC Treatment Fund Disclaimer linked here
  3.  In the NOCC Clinical Trial Fund Disclaimer linked here

Disclosure of Information
We may share or disclose your information to the following categories of third parties and for the following reasons:

  • To third-party service providers, agents, or independent contractors who help us maintain our Services and provide other administrative services to us to resolve issues presented by the patients, to process an application for assistance, to process a claim being made against a financial award that has been provided, as required by a partnering organization or as required by law. The patient, or the authorized representative, is notified of these disclosure practices via a written program disclaimer provided via mail, email, and publication on the NOCC website.
  • We may share your personal information during any reorganization process, including, but not limited to, mergers, acquisitions, and transfers of all or substantially all of our assets.
  • We may disclose your personal information to law enforcement, government agencies, and other related third parties to comply with the law, enforce our policies, or protect our or others’ rights, property, or safety.
  • We may disclose information to third parties where necessary to assist in fraud protection and to minimize credit risk.

Collection and Use Of Information From Children
NOCC’s online services are not intended for use directly by children. We do not knowingly collect personal information directly from children; none of our online services are designed to attract children. If we learn that a person under the age of 13 has directly provided personal information to us, we will delete such personal information as soon as possible.

Notice Regarding Public Posting Areas
Please note that any information you include in a message you post to any chat room, forum, or other public posting area is available to anyone with Internet access. If you do not want people to know your email address, do not include it in any message you post publicly. PLEASE BE EXTREMELY CAREFUL WHEN DISCLOSING ANY INFORMATION IN CHAT ROOMS, FORUMS, AND OTHER PUBLIC POSTING AREAS. WE ARE NOT RESPONSIBLE FOR THE USE BY OTHERS OF THE INFORMATION YOU DISCLOSE IN CHAT ROOMS, FORUMS AND OTHER PUBLIC POSTING AREAS.

Third-Party Links
You might find links to third-party websites on our website. These websites should have their own privacy policies, which you should check. We do not accept any responsibility or liability for their policies as we have no control over them.

Media Release Form
Certain patients may be contacted by NOCC regarding participation in public appearances, media interviews, and other outreach activities. These voluntary activities have no bearing on the delivery of services to patients through NOCC programs. Before participating in such activities, patients must complete a media release form. Only patients who have provided authorization to NOCC to share their personal information publicly will be engaged in media events and opportunities.

Information Ownership and Sharing
NOCC is the sole owner of the personal information collected through NOCC programs, except in certain programs where NOCC partners with another organization to deliver a program. NOCC collects information that patients voluntarily provide, or that is given to us by patients’ authorized representatives and providers, including but not limited to family members, caregivers, guardians, medical providers, pharmacies, health care facilities, diagnostic laboratories, medical equipment providers, health and welfare benefit plans, insurance companies, benefit administrators and employers.

Security
We implement reasonable security measures to ensure the security of your personal information. Please understand, however, that no data transmissions over the Internet can be guaranteed 100% secure. Consequently, we cannot ensure or warrant the security of any information you transmit to us, and you understand that any information you transfer to us is done at your own risk. If we know about a security systems breach, we may try to notify you electronically so that you can take appropriate protective steps. By providing personal information to us, you agree that we can communicate with you electronically regarding security, privacy, and administrative issues relating to your use of the NOCC programs. We may post a notice via our websites if a security breach occurs. We may also email you using the email address you provided in these circumstances. Depending on where you live, you may have a legal right to receive notice of a security breach in writing.

International Data Transfers
We are based in the United States. If you choose to provide us with information, please understand that your personal information may be transferred to the United States and that we may transfer that information to third parties across borders and from your country or jurisdiction to other countries or jurisdictions around the world. If you are visiting from the EU or other regions with laws governing data collection and use that may differ from US law, please note that you are transferring your personal information to the United States and other jurisdictions which may not have the same data protection laws as the EU. We put appropriate operational, procedural, and technical measures in place to protect your personal information. You acknowledge that by providing your personal information: (i) your information will be used for the uses identified above in accordance with this Privacy Policy; and (ii) your information may be transferred to the US and other jurisdictions as indicated above, in accordance with applicable law.

Access to and Updates of Your Information
Patients may request a printed copy of their personal information that is electronically stored at NOCC and provide updates to their personal information by contacting us via email at nocc@ovarian.org, by calling 1-888-682-7426, or by writing to National Ovarian Cancer Coalition,  Attn: Privacy Policy, 12221 Merit Drive, Suite 1950 Dallas, Texas 75251. NOCC does not delete entire patient records that are electronically stored upon request.

Opt-Out of Future Contacts
Patients may opt out of future contact with NOCC at any time. To do so, email us at nocc@ovarian.org, call 1-888-682-7426, or write to National Ovarian Cancer Coalition, Attn: Privacy Policy, 12221 Merit Drive, Suite 1950, Dallas, Texas 75251.

Dispute Resolution and Agreement To Arbitrate
Except where and to the extent prohibited by law, by using the NOCC programs, you and NOCC agree that if there is any controversy, claim, action, or dispute arising out of or related to your use of the NOCC programs or the breach, enforcement, interpretation, or validity of this policy or any part of it (“Dispute”), both parties shall first try in good faith to settle such Dispute by providing written notice to the other party describing the facts and circumstances of the Dispute and allowing the receiving party thirty (30) days in which to respond to or settle the Dispute. Notice shall be sent to:

  • Us, at National Ovarian Cancer Coalition, 12221 Merit Drive, Suite 1950, Dallas, Texas 75251, or
  • You, at the address we have on file for you.

Both you and NOCC agree that this dispute resolution procedure is a condition precedent that must be satisfied before initiating any litigation or filing any claim against the other party. IF ANY DISPUTE CANNOT BE RESOLVED BY THE ABOVE DISPUTE RESOLUTION PROCEDURE, YOU AGREE THAT THE SOLE AND EXCLUSIVE JURISDICTION FOR SUCH DISPUTE WILL BE DECIDED BY BINDING ARBITRATION ON AN INDIVIDUAL BASIS. ARBITRATION ON AN INDIVIDUAL BASIS MEANS THAT YOU WILL NOT HAVE, AND YOU WAIVE, THE RIGHT FOR A JUDGE OR JURY TO DECIDE YOUR CLAIMS AND THAT YOU MAY NOT PROCEED IN A CLASS, CONSOLIDATED, OR REPRESENTATIVE CAPACITY. Other rights you and we would otherwise have in court will not be available or more limited in arbitration, including discovery and appeal rights. The arbitrator, and not any federal, state, or local court or agency, shall have exclusive authority to resolve any dispute arising under or relating to the interpretation, applicability, enforceability, or formation of this policy, including any claim that all or any part of this policy is void or voidable.

How We Respond To Do-Not-Track Signals
Currently, our websites do not recognize automated browser signals regarding tracking mechanisms, which may include “Do Not Track” instructions.

Text Messaging
Our organization uses text messaging for conversational communication with external stakeholders, including but not limited to customers, donors, volunteers, contractors, suppliers, students, and personal contacts. We also use text messaging to inform our constituents and community about our programs and services, upcoming events, and the latest updates.
You may opt out of receiving messages at any time by texting STOP in response to any of our messages. Your privacy is important to us, and we ensure that your contact information is used solely for the purposes outlined above and will not be shared with third parties/affiliates for marketing/promotional purposes. Our employees and volunteers are committed to maintaining the confidentiality of your information and will only use it in accordance with this policy.

Cookies and Pixels
A “cookie” is a small file a website sends to your browser, which may be stored on your hard drive. The NOCC website uses cookies to improve our visitors’ online experience and simulate a continuous connection to the NOCC website by letting us “remember” your preferences on our site. No personally identifiable information is stored in these cookies. You can manually delete all cookies within your browser’s privacy settings. You can also set your browser not to accept cookies. For more information about disabling cookies, refer to your browser application’s “help” section. In addition, The NOCC website uses “pixels,” or transparent GIF files, to help manage online advertising. These pixels do not collect identifying information.

Your California Privacy Rights
California Civil Code Section 1798.83 permits users who are California residents to request certain information regarding our disclosure of personal information to third parties for their direct marketing purposes. We do not share personal information with third parties for their direct marketing purposes.

Printed Copy of this Policy
To request a printed copy of this policy or any NOCC program disclaimer, email us at nocc@ovarian.org, call 1-888-682-7426, or write to National Ovarian Cancer Coalition, Attn: Privacy Policy, 12221 Merit Drive, Suite 1950, Dallas, Texas 75251.

Donor Policy
The National Ovarian Cancer Coalition guarantees that we will not trade, sell, or share any donor’s personal information with anyone else or send donor mailings on behalf of other organizations. This policy applies equally to online donors via the NOCC website and NOCC website donation platform and to offline donors making contributions via cash, check, money order, ACH, third party, and any additional offline methods of contribution.

Collect Payment Information
NOCC does not collect credit and debit card information directly and kindly asks you not to share this information with us when submitting requests for additional information. NOCC uses third-party credit card processors (“Payment Processors”) to process our organization’s online donations and other donations. Please note that your credit and debit card information (number, expiration date, security code) is provided directly to the Payment Processor and stored by the Payment Processor, not by us. As such, it is essential to review the Payment Processor’s privacy policy and terms of use to understand their information security practices. The Payment Processor may share all or some of the following information with us so that we may reach out to you in the future about our organization: first and last name, physical address, email address, phone number, donation amount, and dedication information if applicable (i.e., description of dedication, contact information, and dedication message).

Here is a list of our current Payment Processors and links to their policies:
One Cause Privacy Policy: https://www.onecause.com/general/security-privacy-policy/

Data Deletion
In order to delete your data, please email us at nocc@ovarian.org, call 1-888-682-7426, or write to National Ovarian Cancer Coalition, Attn: Privacy Policy, 12221 Merit Drive, Suite 1950, Dallas, Texas 75251. Note that some of your data may still be stored on third-party sites.

Notification of Patient Privacy Policy Changes
The current Patient Privacy Policy is posted at www.ovarian.org. We reserve the right to modify this policy at any time. We will update the “Effective Date” above when we do so. You will be notified of any material changes to this policy via a posting on the website.

Questions or Concerns
If you have any questions regarding this Privacy Policy or would like more information on our privacy practices, please email us at nocc@ovarian.org, call 1-888-682-7426, or write to National Ovarian Cancer Coalition, Attn: Privacy Policy, 12221 Merit Drive, Suite 1950, Dallas, Texas 75251.