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.

If you have any questions or comments about this Privacy Policy or our use of your Personally Identifiable Information, please contact us at subscriptions@patientworthy.com.

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.

Google Analytics

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

When you visit the Site, our servers automatically record information that your browser sends whenever you visit a website (“Log Data“). This Log Data may include information such as your IP address, browser type or the domain from which you are visiting, the web-pages you visit, the search terms you use, and any advertisements on which you click. For most users accessing the Internet from an Internet service provider the IP address will be different every time you log on. We use Log Data to monitor the use of the Site and of our Service, and for the Site’s technical administration. We do not associate your IP address with any other Personally Identifiable Information to identify you personally, except in case of violation of this Privacy Policy or Terms and Conditions.


Like most websites, we use cookies and web log files to track Site usage and trends, to improve the quality of our service, to customize your experience on patientworthy.com, as well as to deliver third-party advertising to users both on and off the patientworthy.com site. A cookie is a tiny data file that resides on your computer, mobile phone, or other device, and allows us to recognize you as a user when you return to the patientworthy.com website using the same computer and web browser. You can remove or block cookies using the settings in your browser, but in some cases this may impact your ability to fully utilize patientworthy.com. One type of cookie, known as a “persistent” cookie, is set once you’ve logged in to patientworthy.com. The persistent cookie will allow us to recognize you as an existing user so you will not need to log in before using the Services. In order to access or change any of your Personally Identifiable Information or email address or password, or to send a message to another user, however, you must log in securely again with your password even if your computer contains your persistent cookie. Another type of cookie, called a “session” cookie, is used to identify a particular visit to patientworthy.com. Session cookies expire after a short time or when you close your web browser.

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 subscriptions@patientworthy.com. 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

The information you provide to the Site may reveal, and/or allow others to identify, your nationality, ethnic origin, religion, gender, age, geography, or other Personally Identifiable Information. By providing information to the Site for the purposes of creating your user account or adding any additional details to your patientworthy.com profile, you are expressly and voluntarily accepting the terms and conditions of this Privacy Policy and patientworthy.com’s Terms and Conditions that allow patientworthy.com to process information about you. Supplying information to patientworthy.com, including any information deemed “sensitive” by applicable law, is entirely voluntary on your part. You have the right to withdraw your consent to patientworthy.com’s collection and processing of your information at any time, in accordance with the terms of this Privacy Policy and the Terms and Conditions, by closing your account, but please note that your withdrawal of consent will not be retroactive and any information you provided prior to terminating your account will continue to be available on the Site unless you request to delete the same as provided in this Privacy Policy.

patientworthy.com Communications

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

patientworthy.com takes the privacy of our members very seriously. We do not sell, rent, or otherwise provide your Personally Identifiable Information, including your email address and password, to any third parties, except as described in this Privacy Policy or required by law. We have third-party affiliates who participate in a variety of market research, educational, and disease awareness activities. We may share your name and contact information, including your email address, with one or more of our third-party affiliates so that you can be made aware of such opportunities and, if applicable, have the chance to participate.

Service Providers          

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.

Otherwise, we do not share, sell, or otherwise disclose Personally Identifiable Information (including your e-mail address or your personal information) to any other company that we do not control without your prior consent, except as required by law (see Legal Process, below) or otherwise stated in this Privacy Policy. For example, we do not rent our member list to other companies. We may, however, provide other companies with aggregated data about our members that does not contain contact or other Personally Identifiable Information. Thus, for example, we may inform a health association of the number of members we have on this Service, or the number of members nominated for our Service in a particular geographical region.

Business Transfers

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 subscriptions@patientworthy.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 subscriptions@patientworthy.com 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.