Effective May 25, 2018
Welcome to Patient Worthy, which operates through the website patientworthy.com (the “Site”). Patient Worthy is a place where persons living with rare diseases can connect, gather information, share their stories, and learn from the experiences of others living with rare diseases. Patient Worthy knows that your health is a personal matter and we respect your privacy.
We collect your personal information in the following ways:
To access various services available through the Site, you may choose to provide patientworthy.com with the following information: name, email address, mailing address, country, zip code, diagnosis of interest, and role (i.e. patient or caregiver). This information is referred to as your “Personally Identifiable Information.”
patientworthy.com uses Google Analytics to anonymously track the use of the features of our Site. This allows patientworthy.com to monitor the performance of the Site and Service and learn how different aspects of the Site and Service are used.
Log files, IP addresses and Information About Your Computer
In the course of optimizing the Services to our users, we may allow authorized third parties to place or recognize a unique cookie on your browser. Any information provided to third parties through cookies may not be personally identifiable but may provide general segment information (e.g., your diagnosis, stage of treatment, health care experiences, geography) for greater customization of your user experience. Most browsers are initially set up to accept cookies, but you can reset your browser to refuse all cookies or to indicate when a cookie is being sent. patientworthy.com does not store unencrypted Personally Identifiable Information in the cookies.
Rights to Access, Correct and Eliminate Information About You
You have a right to access, modify, and correct the data you supplied to patientworthy.com. If you update any of your information, we may keep a copy of the information that you originally provided to us in our archives for uses documented in this policy. You may request deletion of your information at any time by emailing firstname.lastname@example.org. We will respond to your request within 30 days.
We may use your personal information in the following ways:
Consent to patientworthy.com Processing Information About You
As described in the Terms and Conditions, we will communicate with you through email and notices posted on patientworthy.com, or through other means available through the Service. We may send you a series of emails that help inform new users about the features of the Services, and we will also send you service messages relating to the functioning of the Services.
If you contact us by email through the Site, we may keep a record of your contact information and correspondence, and may use your email address, and any information that you provide to us in your message, to respond to you.
Sharing Information with Third Parties
We engage certain trusted third parties to perform functions and provide services to us, including, without limitation, hosting and maintenance, customer relationship, database storage and management, direct marketing campaigns and other promotional uses. We will share your Personally Identifiable Information with these third parties, but only to the extent necessary to perform these functions and provide such services. In addition, if you authorize us to do so, we may share your Personally Identifiable Information with third parties who have information about opportunities that are available for you to share your story or participate in disease awareness initiatives.
Compliance with Laws and Law Enforcement
patientworthy.com cooperates with government and law enforcement officials or private parties to enforce and comply with the law. We may disclose any information, including Personally Identifiable Information, about you to government or law enforcement officials or private parties as we, in our sole discretion, believe necessary or appropriate to respond to claims, legal process (including subpoenas), to protect the property and rights of patientworthy.com or a third party, the safety of the public or any person, to prevent or stop any illegal, unethical, or legally actionable activity, or to comply with the law.
patientworthy.com may sell, transfer or otherwise share some or all of its assets, including your Personally Identifiable Information, in connection with a merger, acquisition, reorganization or sale of assets or in the event of bankruptcy.
Changing or Deleting Information
If you have registered for Services, you may access and update or correct the information you provided to us by e-mailing us at email@example.com .
patientworthy.com is very concerned about safeguarding the confidentiality of your Personally Identifiable Information. We employ administrative, physical and electronic measures designed to protect your information from unauthorized access. We will make any legally-required disclosures of any breach of the security, confidentiality, or integrity of your unencrypted electronically stored personal data to you via email or conspicuous posting on this Site in the most expedient time possible and without unreasonable delay, consistent with (i) the legitimate needs of law enforcement or (ii) any measures necessary to determine the scope of the breach and restore the reasonable integrity of the data system.
Links to Other Websites
Our Site contains links to other websites. The fact that we link to a website is not an endorsement, authorization or representation of our affiliation with that third party. We do not exercise control over third party websites. These other websites may place their own cookies or other files on your computer, collect data or solicit Personally Identifiable Information or such other personal information from you. We encourage you to read the privacy policies or statements of the other websites you visit that affect your Personally Identifiable Information.
Our Policy Toward Children
The Site is not directed to persons under 18. If a parent or guardian becomes aware that his or her child has provided us with personally identifiable information without their consent, he or she should contact us at firstname.lastname@example.org and request that we review, delete, or stop the collection of Personally Identifiable Information relating to their child. We do not knowingly collect personally identifiable information from children under 18. If we become aware that a child under 18 has provided us with Personal Identifiable Information, we will delete such information from our files.
HIPAA and Your Personally Identifiable Information on the Site
Your Personally Identifiable Information on this Site is NOT protected by the Health Insurance Portability and Accountability Act (“HIPAA“). You are cautioned to strongly consider the personal information, including your Personally Identifiable Information, you provide to the Site, as any personal information you provide, including any medical information may be publicly available. If you do not want your personal medical information publicly available on the Site, then do not place any personal medical information on the Site that you do not want shared publicly.