privacy policy | DuchenneXchange

The onevoice website: https://www.duchennexchange.org/ , (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 that rareLife solutions, inc. (“rareLife solutions”), and rareLife solutions’ collaborator, CureDuchenne—a 501(c)(3) non-profit organization with a mission to extend and improve the lives of children and adults with Duchenne muscular dystrophy (“CureDuchenne”, together with rareLife solutions “we” or “our” or “us”) collects from people who visit the Site, and how that information may be used and shared. In order to explore certain restricted areas of the Site, visitors must register to become community members (“community members”). If you do not register as a community member (“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 code of conduct (https://www.duchennexchange.org/legal/) 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, rareChat, rareQuestionnaires; and
    • Connections to other community members on the Site (e.g., rareCourage, rareTeams, rareMates) and people outside the Site who are shared with by community members.

    We will collect this type of information from you when you voluntarily provide it through the Site (whether about yourself, or someone else such as a child of a guardian who is the community member), such as if you choose to register as a community member or if you post it in comments on the Site or send it to us by e-mail.

    Some of the information that we collect from community members will not be made public or shared with other users, unless expressly permitted by or consented to by the community member which may include the choice by that community member to post or input such information into display fields that are viewable by other community members. 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 community member 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 community members and may result in unsolicited messages or other forms of contact from other community members. 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 https://www.duchennexchange.org/legal/ .
    • Cookies
      The Site also automatically collects information about you as a Site visitor that relates to your use of the Site but that does not directly reveal your specific identity. Such information 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 us to directly contact the community member.
      • Adverse Events. We and/or Collaborators (as defined below), may also 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. The information we provide may include, but is not limited to, information posted or submitted by community members in rareCourage, rareClinical, my rareJourney, rareQuestionnaires or other similar data collectors in the Site. In addition, certain sections of the 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 community members, and we 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 community members who Subscribe. If you join our mailing list or otherwise accept to be notified of certain events and activities (by agreeing to be 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, recruiting clinical trials, certain content sponsored by our Collaborators, etc.). You may opt out of receiving such communications, as described in those communications and in Section 4 below on managing your PII.
      • Code of Conduct Compliance. We analyze rareCourage UGC which may contain PII to ensure the Code of Conduct is being adhered to by and among the community members to maintain an encouraging and positive tone and tenor.
      • 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, 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 and/or to Collaborators, such as the number of patients with a particular disease or condition, on a particular treatment, or experiencing a particular symptom. This anonymized (or de-identified) information would be visible by individuals that are not community members, and great care is taken in aggregating information so that it is unlikely that someone could identify any particular community member.
    • 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 in certain circumstances, including:
      • Affiliates. We may share PII with any entities that may become affiliates of rareLife solutions or of CureDuchenne.
      • Staff or Moderators. rareLife solutions or CureDuchenne staff or moderators may sometimes need access to your PII in the course of troubleshooting problems or resolving complaints.
      • Research Collaborations. We may share or sell certain anonymized information to Collaborators, such as pharmaceutical or medical device manufacturers, advocacy organizations, 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 such information, we remove community members’ PII to minimize the risk of a Collaborator identifying any particular community member.
      • Surveys. We may occasionally ask community members to complete voluntary surveys and/or polls about their experiences, unmet needs and/or other topics, including the various features within onevoice or proposed to be included. We may aggregate anonymized data and combine such responses with community members’ 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 developer and 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 through the Site. In response to such a request, we will provide the Provider/Partner with anonymized and aggregated PII, unless the community member 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 or CureDuchenne, any of their respective affiliates, or their respective assets, rareLife solutions or CureDuchenne may transfer any and all information collected 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 Policy; (v) to protect and defend our rights and property; (vi) to protect the interests and safety of rareLife solutions, CureDuchenne, 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.
      • Gaining HCP Status. If a community member registers or switches to the status of a licensed healthcare professional (HCP) or researcher, the community member’s full name and affiliation will be viewable.
      • Site Activity Participation. If a community member agrees to participate in an activity offered through the Site including, for example, the clinical trial Matching Wizard, we may share the community member’s information (e.g., name, email) for the purpose of planning and executing the activity.
    • Collaborators. Community members should understand that information they post on public areas of the Site may be shared in the various communities, 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 community members are encouraged to share their information, greater amounts of information or data may increase the likelihood that a community member could be located or identified.
    • Opt Out. At any time, you may opt out of allowing us to use your PII for the purposes noted in this Section 3 by using our contact us form or by sending us an email at rarelife@rarelifesolutions.com; provided, however, that we may still share PII as required by law and your use of the Site may be impacted or limited. We will process your request within a reasonable time. However, please note that in certain instances, we may have already used or shared 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. We use a third party data security vendor, which stores information and data collected on the Site 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, we cannot guarantee the identity of any other community members with whom a community member may interact in the course of using the Site or who may have access to a community member’s PII. Additionally, we cannot guarantee the integrity or authenticity of any data that community members provide about themselves
    • Third-Party Sites. The Site may contain links to third-party websites. These linked sites are not under our 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 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 Policy. If you are a member or user of another rareLife website (including as related to a different diseases), the separate privacy policy applicable to such other site shall apply to your use thereof.
  6. Collection of PII by Others Through the Site
    We do not allow others (except for our service providers or third parties operating on our behalf) to collect the PII of visitors to the Site by tracking the usage of either the Site or other websites. However, you should use discretion when providing information about yourself or others on the Site: although (i) third parties are not permitted to collect PII of visitors to the Site (except for our service providers or third parties operating on our behalf), and (ii) we restrict access to certain pages on the Site to only registered community members, we cannot guarantee absolute privacy, confidentiality, or security. In addition, some of the features, functions, content or information on the Site may link you to separate, independent sites operated by third parties that have no affiliation with rareLife solutions or CureDuchenne. This Policy is only applicable to the 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 we discover that we have obtained PII from a child under age 13, we will delete it.
  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 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: July 27, 2017
    rareLife solutions, Inc.
    53 Water St, 2nd Floor
    South Norwalk, CT 06854
    rarelife@rarelifesolutions.com
    © 2018 rareLife solutions, Inc. All rights reserved.