Rare Kids Network Privacy Statement

Effective Date: May 25, 2017

Rare Kids Network, Inc. (“RKN”, “we”, “us”, or “our”) is a non-profit organization that provides comprehensive outpatient services to assist children with rare illnesses. RKN is committed to maintaining the confidentiality, integrity and security of personal information about our current and prospective children and their caregivers (“Recipients”). RKN has developed this Privacy Statement (this “Statement”) to describe how we may collect information about you through your interactions with us, on our website and mobile site www.rarecareforkids.org (the “Site”), from third parties that provide data to us, or through your interactions with us (collectively, the “Services”), how we use information, and how and under what circumstances we share that information.

When you submit information to us or through the Site, you consent to the collection and processing of your information as described in this Privacy Statement. IF YOU DO NOT AGREE WITH ANY PART OF THIS STATEMENT, THEN PLEASE DO NOT USE THE SITE OR SUBMIT INFORMATION TO US

We may change this Privacy Statement. The “Effective Date” legend at the top of the page indicates when this Privacy Statement was last revised. Any changes will become effective when we post the revised Privacy Statement on the Site. Your continued use of the Services following these changes means that you accept the revised Privacy Statement.

1. Information We Collect

RKN collects Personal Information about you when you voluntarily request information from RKN or supply information through the Site that personally identifies you or any other person for whom you may be seeking Services and/or allows us to contact you or that other person, including any and all materials submitted by you when you fill out a submission form, questionnaire or inquiry. RKN also collects Personal Information when a medical provider refers you to us. “Personal Information” means information associated with or used to identify or contact you. This includes information such as your name, address, telephone number and e-mail address. We also collect information through the Services that does not, on its own, identify a specific individual, including age, diagnosis, date of birth, native language and medical treatment instructions, medical appointments, insurance information, medications, special needs, etc. If we link this information with your Personal Information in a way that renders it individually identifiable, we will treat it as Personal Information in accordance with the terms of this Privacy Statement.

If you submit any personal information relating to another person whose care you are managing, you represent that you have the authority to do so and to permit us to use the information in accordance with this Privacy Statement. You agree not to provide us information about any other person unless you have that person’s express permission.

You agree that we may use your Personal Information as follows:

  • to establish and manage business relations with you;
  • to provide services or information to you;
  • to communicate with you via email or phone;
  • for customer service, security, to detect fraud or illegal activities,
  • to prevent or investigate activity we think may be potentially illegal, unlawful or harmful;
  • for archival and backup purposes in connection with the provision of the services;
  • to better understand how Recipients access and use the Site, for the purposes of trying to improve the Site, diagnose problems, administer our Site and respond to Recipient preferences;
  • to enforce our other applicable policies.

When you use the Site we may, like most website operators, automatically collect certain non-identifying information about you or “Usage Data”, such as your movement about the Site, the type of browser or operating system you use, or the domain name of the website from which you linked to the Site. We use the information that we collect to operate, improve and personalize the Site, to provide customer service, and to detect, prevent and mitigate fraudulent or illegal activities.

2. Disclosing Your Information to Third Parties

Any information we gather, whether voluntarily provided by you or automatically collected, may be used for our internal business purposes and disclosed to third parties, as stated below. We treat the Personal Information you submit to us as confidential. We may share Personal Information with other trusted companies or people to perform functions for which we engage them when (1) you have authorized our sharing of the information, or (2) we need to share the information in order to provide a service requested by you or (3) we need to share the information with others who work on our behalf to provide a product or service that you have requested. These companies or individuals may use your Personal Information only to the extent necessary to assist us and have agreed to keep your Personal Information confidential. RKN does not sell or rent any Personal Information to third parties.

Notwithstanding any other statements or representations in this Statement or elsewhere on our Site, we reserve the right to disclose any information in our possession if we are required to do so by law or we believe, in good faith, that such a disclosure is necessary to comply with the law, court order or other government or law enforcement agency, defend our rights or property, or to respond to an emergency situation or protect the rights, property or safety of Recipients.

RKN reserves the right to transfer Personal Information to a purchaser or successor entity in the event of a sale or other corporate transaction involving some or all of our business.

3. Security

We implement a variety of security measures to maintain the safety of your Personal Information. However, the security of information transmitted through the internet can never be guaranteed. We (like all websites) cannot warrant or guarantee 100% security of any information you transmit to us through the Site.

We may make chat rooms, forums, message boards or news groups available to you. Please remember that any information disclosed in these areas is public. You should exercise caution when disclosing Personal Information in these areas, as this information is made available to other users. Do not disclose information in these public forums that might be considered confidential or proprietary or that you do not wish to be publicly available or that you are prohibited from disclosing.

4. Managing “Do Not Track” Signals

Some browsers have a Do Not Track (“DNT”) feature that lets you tell websites that you do not want your online activities tracked. When you choose to turn on the DNT setting in your browser, your browser sends a special signal to websites, ad networks, plug-in providers, and other web services you encounter while browsing to stop tracking your activity via cookies or other tracking technologies. RKN does not track its website users over time and across third party websites.

5. Third Party Links

The Site may contain links to websites maintained by third parties with which we have no affiliation. This Statement does not reflect the privacy practices of those sites, and you should consult the privacy policies of those sites to learn about their practices. A link to any third party site does not mean that we endorse it or the quality or accuracy of information presented on it.

6. Additional Protections for Children

While the Services provided are designed for children, the Site itself is not designed for or targeted to children under the age of 13. RKN will never knowingly solicit or collect personally identifiable information from a child under the age of 13 through the Site without verifiable parental consent or unless that child’s parent or legal guardian has submitted the information in connection with the Services. If we discover that a child under the age of 13 has submitted personally identifiable information without verifiable parental consent, we will delete that information.

7. Changing or Deleting Personal Data

We strive to maintain the accuracy of Personal Information collected. We will work with you to correct any information you submitted to us upon your request. If you do not wish to receive communications from us, you may opt-out of receiving them by clicking the unsubscribe link featured at the end of our emails or by contacting us at info@rarecareforkids.org.

8. Your Rights Under California Law

If you are a California resident under 18 years old and have an account with us or have linked to us through social media, you can request that we remove content or information that you have posted to our website or other online services. Note that fulfilment of the request may not ensure complete or comprehensive removal (e.g., if the content or information has been reposted by another user). To request removal of content or information, please email or call us using the contact information below.

9. Contacting Us

If you have questions or comments about this Statement or would like to review, update correct or delete any personally identifiable information you have provided, please contact us at info@rarecareforkids.org.

10. Changes to Our Privacy Statement

The Effective Date of this Statement is set forth at the top of this Statement. RKN may modify this Statement at any time. We will notify you by posting the modified Statement, and its effective date, on this page. For this reason, you should regularly review this Statement and note the effective date. Your continued use of the Site after the Effective Date constitutes your acceptance of the amended Privacy Statement. The amended Privacy Statement supersedes all previous versions.