privacy policy | FAPvoice

The onevoice website www.FAPvoice.com (the “Site”) is specifically designed to harness the power of collaboration in rare disease — creating an online solution for all rare disease stakeholders. Various feature groups within the “Site” allow visitors and registered users to access curated disease information, clinical trial tools and share experiences and information about their diseases, conditions, and symptoms and provide compassion, empathy and encouragement to help build a strong community for all rare disease stakeholders. In offering these services and the Site generally, we respect your privacy concerns.

This Privacy Policy (the “Policy”) describes the type of information rareLife solutions, Inc. (“rareLife solutions”) collects from people who visit the Site, and how that information may be used and shared. In order to explore the Site beyond its landing page, visitors must register to become onevoice members (“onevoicers”). If you do not register as a onevoicer (“visitors”), the only information the Site will collect from you is the non-personally identified information collected through “cookies,” as described below in the section on cookies.

This Policy is designed to ensure that you understand our practices with respect to information we collect from you throughout the Site. By using the Site, you agree to the terms of this Policy, which are also incorporated by reference into the Terms and Conditions of Use of the Site, to which you must agree in order to use the Site. If you do not agree to the terms of this Policy, please do not use the Site.

We may update this Policy at any time. Any changes to the Policy will become effective upon the date of our posting of the revised Policy on the Site. If we make a material change to the terms of the Policy, we will post a notice that it has been revised on the home page of the Site. If you use the Site after that date, you will be deemed to have accepted the Policy’s updated terms.

  1. What Types of Information Do We Collect?
    The information we collect through the Site includes “Personally Identifiable Information” (“PII”), which is information that identifies an individual personally, such as first and last name, date of birth, postal address, email address, and telephone number. Examples of PII may include, but are not limited to:

    • Demographic or biographical information, such as age, gender, ethnicity, religion, and location (city, state, country);
    • Condition/disease information, including diagnosis, symptoms (e.g., frequency, duration, severity), family history;
    • Course of treatment (e.g., medicines, surgeries, therapies, etc.), including side effects;
    • Photographs or pictures;
    • Account information from social media platforms;
    • Sensor information from fitness or activity trackers;
    • Laboratory or diagnostic test results;
    • Genetic information;
    • Electronic health records;
    • Information shared via free text fields, such as in rareCourage, rareClinical, rareProfile, myBinder, rareQuestionnaires; and
    • Connections to other onevoicers on the Site (e.g., rareCourage, rareTeams, rareMates) and people outside the Site who are shared with by onevoicers.

    We will collect this type of information from you when you voluntarily provide it through the Site, such as if you choose to register as a onevoicer or if you post it in comments on the Site or send it to us by e-mail.
    Some of the information that rareLife solutions collects from onevoicers will not be made public or shared with other uses. This may include, but is not limited to:

    • Name, email address, and password as input during registration;
    • Mailing address, as collected from registration, email, private message, or other activities;
    • Date of birth, as collected in a onevoicer profile; and
    • Private messages
      However, if you post PII on the public areas of the Site (e.g., via chat rooms, bulletin boards, post cards or invitations), that PII is generally accessible to and may be collected and used by other onevoicers and may result in unsolicited messages or other forms of contact from other onevoicers. You are therefore advised to exercise caution and discretion when posting PII in such areas of the Site. You are solely responsible for the information and other content you post on or through the Site. See Terms and Conditions of Use

      • Cookies
        The Site also automatically collects information about you as a Site visitor that is not PII but relates to your use of the Site. Non-PII is aggregated information, demographic information and any other information that does not reveal your specific identity. Non-PII is “passively” collected from you through browser navigational tools, such as cookies and pixel tags. These types of technologies enable the Site to compile statistics about our daily number of site visitors or specific page requests, while not identifying you personally, other than by your IP address, which is the Internet Protocol address of the computer that you use to access the Site. At this time, we do not track your personal information about your online activities over time and across third party websites. We also do not authorize unaffiliated third parties to collect any personal information from you on the Site for purposes of such online tracking.
        A cookie is a small data file that a Web site transfers to a user’s hard drive when a user visits the Web site. A cookie file can contain information such as a unique ID that the site uses to track the pages visited, and is a standard method of registering website user preferences. These preferences are stored in a file on your computer’s hard disk drive. We also use ‘analytical’ cookies. These allow us to recognize and count the number of visitors to the Site and to see how visitors move around the Site when they’re using it. This helps us improve the way our website works, for example by making sure users find what they need easily.
        Our Site uses both persistent and session cookies. Persistent cookies are cookies that stay on your computer permanently until you “manually” delete them. Session cookies delete themselves automatically when you leave a website and go to another one or shut down your browser.
        You can set your browser to accept all cookies, to reject cookies, or to notify you whenever a cookie is offered so that you can decide each time whether to accept it. However, refusing a cookie may in some cases preclude you from using, or negatively affect the display or function of, the Site or certain areas or features of the Site. To learn more about cookies, including how to enable cookies, change your browser settings and find and delete cookies on your hard drive, please refer to your web browser’s help menus or visit www.allaboutcookies.org.
        By using the Site, you are deemed to unambiguously agree to its use of any cookies that you do not disable.
  2. How Do We Use the Information the Site Collects?
    • PII. We may use the PII collected through the Site for any or all of the following purposes:
      • Responses to Requests. We may use PII about you to respond to your requests, such as to answer your questions about using the Site, content you may have posted, your experience using the Site, and to provide you with clarifications, explanations or perhaps the benefits offered by features in the Site.
      • Emergency. We may use PII in the case of an emergency or other situation that we determine requires rareLife solutions to directly contact the onevoicer.
      • Adverse Events. rareLife solutions, as required by law and/or its Collaborators, may also be required or alternatively at its option for the greater good, to report certain PII as adverse event and drug safety information to the U.S. Food and Drug Administration (FDA), the Centers for Disease Control and Prevention (CDC), and/or other U.S. or international governmental organizations, as well as directly to pharmaceutical and medical device companies. rareLife solutions will not provide Private Data to such government entities, but may contact onevoicers for follow-up if requested by the government or Collaborators. The information rareLife solutions provides may include, but is not limited to, information posted or submitted by onevoicers in rareCourage, rareClinical, my rareJourney, rareChat, rareQuestionnaires or other similar data collectors in the Site.In addition, certain sections of our Site may be provided with the support of Collaborators. These Collaborators may have adverse event reporting requirements that relate to regulated products that are used by onevoicers, and rareLife solutions may assist such Collaborators with reporting adverse events to regulatory agencies.To learn more about adverse event reporting to the US Food and Drug Administration: http://www.fda.gov/Safety/MedWatch/
      • Communications with onevoicers who Subscribe. If you join our mailing list (by agreeing to be contacted with special offers and informed of special events, etc.), we will send you information that we believe may be of interest to you (for example, upcoming webinars, charitable events, new publications or recruiting clinical trials, etc.). You may opt out of receiving such communications, as described in those communications and in Section 4 below on managing your PII.
      • Internal Business Purposes. We use PII about you for our internal business purposes, including in particular to help us determine usage of all of our feature groups (including rareCourage, rareClinical, my rareJourney, rareChat and other data collectors), and help us improve our offerings. We also use PII for related internal purposes, such as data analysis, audits, enhancing the Site, identifying usage trends and determining the effectiveness of our promotional messaging.
    • Aggregated Information. We may aggregate certain types of non-personally identifiable PII to report and report this information publicly, such as the number of patients with a particular disease or condition, on a particular treatment, or experiencing a particular symptom. This anonymized information would be visible by individuals that are not onevoicers, and great care is taken in aggregating information so that it is unlikely that someone could identify any particular onevoicer.
    • Other Information. We use non-PII to help us improve the Site, such as by analyzing usage of certain pages or functions on the Site. We may also use non-PII for other purposes, but if any such use involved combining the non-PII with any data so that it became identifiable to you or another person, we would then treat it as PII in accordance with this Policy.
  3. With Whom Do We Share Information Collected Through the Site?
    • PII. We may share PII we collect through the Site with in certain circumstances, including:
      • Affiliates. We may share PII with any entities that may become affiliates of rareLife solutions.
      • rareLife solutions Staff and Moderators. rareLife solutions staff and moderators may sometimes need access to your PII in the course of troubleshooting problems or resolving complaints.
      • Research Collaborations. rareLife solutions may sell certain anonymized information from onevoice to Collaborators, such as pharmaceutical or medical device manufacturers and academic institutions that are researching and analyzing ways to better understand patient experience and improve treatment and patient outcomes. Before delivery or exposure of this anonymized information, rareLife solutions removes onevoicers’ Private Data to minimize the risk of a Collaborator identifying any particular onevoicer.
      • Surveys. rareLife solutions may occasionally ask onevoicers to complete voluntary surveys about their experiences, unmet needs and/or other topics, including the various features within onevoice or proposed to be included. rareLife solutions may aggregate anonymized data and combine such responses with onevoicers’ PII and share or sell it to Collaborators.
      • Third Party Service Providers. We may share PII with unaffiliated third parties who provide us with services, such as the designer of the Site, to provide technology, data analysis, or similar services.
      • Educational Partners/Providers. On occasion, a third-party educational provider or partner (“Provider/Partner”) will ask us for a list of the people who participated in a particular webinar, Q&A, or online community chat activity that was offered by rareLife solutions through the Site. In response to such a request, we will provide the Provider/Partner with anonymized and aggregated PII, unless the onevoicer participant chose to be identified or contacted as part of signing up for the educational activity.
      • Third Parties for Marketing. We do not share PII with unaffiliated third parties for their own marketing purposes.
      • Acquirers or Assignees. In the event of any reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of rareLife solutions, any affiliate, or its assets, we may transfer any and all information that we collect from Site users to the acquiring party or assignee.
      • Entities Entitled Under Law. We may disclose PII about you to others as we believe to be appropriate in the following circumstances: (i) when required by applicable law, including laws outside your country of residence; (ii) to comply with legal process (iii) to respond to requests from public and government authorities; (iv) to enforce the terms and conditions for use of the Site, including this Privacy Policy; (v) to protect and defend our rights and property; (vi) to protect the interests and safety of rareLife solutions or others; and (vii) to permit us to pursue available remedies or limit the damages that we may sustain. We have no obligation to notify you of such disclosures, except as required by applicable law.
    • Use of PII. Under certain circumstances, rareLife solutions may use your PII, including but not limited to:
      • If a onevoicer registers or switches to the status of a licensed healthcare professional (HCP) or researcher, the onevoicer’s full name and affiliation will be viewable;
      • If a onevoicer agrees to participate in a rareLife solutions-organized activity including, for example, the clinical trial Matching Wizard, rareLife solutions may share the onevoicer’s information (e.g., name, email) for the purpose of planning and executing the activity;
      • If a onevoicer voluntarily chooses or opts into a public registry, rareLife solutions will display the onevoicer’s name and some PII as part of this registry (which will be public);
      • If a onevoicer explicitly opts in to have their PII shared with a Collaborator, rareLife solutions will share the information as instructed by the onevoicer (e.g. co-registration with a non-profit).
    • Collaborators. Onevoicers should understand that information they post on public areas of the Site may be shared in the various communities on onevoice, including with other patients and third parties, including but not limited to pharmaceutical and medical device makers, contract research organizations, advocacy groups, academic medical centers, and research institutions (“Collaborators”). While onevoicers are encouraged to share their information, greater amounts of information or data may increase the likelihood that a onevoicer could be located or identified.
    • Opt Out. Upon your registration with onevoice, you were given the option to opt out of allowing rareLife solutions to use your PII for the purposes noted in this section. If you did not opt out initially, you may opt out at any time by visiting the settings in your profile. We will process your request within a reasonable time. However, please note that in certain instances, we may have already used your PII consistent with this Policy prior to your opt out date.
    • Other Information. We may share non-PII, such as the Site usage patterns of Site visitors on an aggregate basis, with third parties, including advertisers interested in advertising on the Site.
  4. How Can You Manage PII We Maintain?
    • Managing Communications With You. If you no longer wish to receive emails from us on a going-forward basis, you may opt-out of receiving such emails by following the “unsubscribe” directions on the e-mails, or by going to your “member settings” page and un-checking the option to receive e-mails from us, or by calling us toll-free at (844) 663-8642 (8:00 am-5:00 pm (ET), Monday-Friday), or by sending an e-mail to rarelife@rarelifesolutions.com with the subject line “Unsubscribe.” We will endeavor to comply with your request as soon as reasonably practicable.
    • Updating or Correcting PII. If you would like to review, correct, update or remove PII about you that you previously provided to us (other than your birth date), you may do so by visiting your “settings” page. If you are unable to locate that page, please inform us by sending us an e-mail at rarelife@rarelifesolutions.com. For your protection, we will only implement such requests with respect to the PII associated with the particular email address that you use to send us your request, and we may need to verify your identity before implementing your request.
  5. How Do We Protect and Maintain PII Collected Through the Site?
    • Security. We use reasonable organizational, technical and administrative measures to help protect against the loss, misuse and alteration of the information under our control. rareLife solutions uses a third party vendor, which stores information and data collected on our Sites in a manner that is consistent with the same integrity, rigor, and technical standards required under the HIPAA Security Rule. However, no data transmission over the Internet or data storage system can be guaranteed to be 100 percent secure. Please exercise caution in sending us any information you consider confidential. It is your personal responsibility to secure your own copies of your passwords and related access codes for our online resources.
    • Data Integrity and Retention. We will retain PII about you for the period necessary to fulfill the purposes outlined in this Policy or our data retention policies unless a longer retention period is required by law. However, rareLife solutions cannot guarantee the identity of any other onevoicers with whom a onevoicer may interact in the course of using the Site or who may have access to a onevoicer’s PII. Additionally, we cannot guarantee the integrity or authenticity of any data that onevoicers provide about themselves
    • Third-Party Sites. The Site may contain links to third-party websites. These linked sites are not under rareLife solutions’s control and we are not responsible for the privacy practices or the contents of any such linked site, or any link contained in any linked site. The fact that we provide a link to a website’s content or present a banner ad or other type of advertisement is not an endorsement, authorization or representation of our affiliation with that third party, nor is it an endorsement of their privacy or information security policies or practices. This Privacy Policy is not applicable to the websites or content of any such third parties. We do not exercise control over third party websites or services. These other websites or services may place their own cookies or other files on your computer, collect data or solicit personal information from you and follow different rules regarding the use or disclosure of the personal information you submit to them. If you provide any PII through any such third party website, your transaction will occur on such third party’s website (not this Site) and the PII you provide will be collected by, and controlled by the privacy policy of, that third party. We recommend that you familiarize yourself with the privacy policies and practices of any such third parties, which are not governed by this Privacy Policy.
  6. Collection of PII by Others Through Our Site
    We do not allow others to collect the PII of visitors to our Site by tracking the usage of either our Site or other websites. In addition, some of the features, functions, content or information on our Sites may link you to separate, independent sites operated by third parties that have no affiliation with rareLife solutions. This Privacy Policy is only applicable to our Site and will not apply to any third party sites.
  7. Use of Site by Children
    This Site may not be used by children under the age of 13 and we do not knowingly collect PII from any individuals under age 13. If you are under age 13, please do not submit any PII to us and if you have done so, including by erroneously registering on the Site, please inform us of that immediately by sending us an e-mail at rarelife@rarelifesolutions.com.
  8. International Transfers and Processing of PII
    By providing your PII to the Site, you fully understand and unambiguously consent to the transfer of such PII to, and the collection, retention and processing of such PII in the United States and other countries or territories.
  9. Contacting Us
    If you have any questions or concerns related to this Privacy Policy or the information practices of this Site, please send us an e-mail at rarelife@rarelifesolutions.com, or write to or call us at the address/phone numbers below.

    Last Updated: February 1, 2016
    T. Anthony Howell, Esq.
    rareLife solutions, Inc.
    8 Wright Street, Suite 107
    Westport, CT 06880
    rarelife@rarelifesolutions.com© 2016 rareLife solutions, Inc. All rights reserved.