The rareLife solutions onevoice website https://www.oneamyloidosisvoice.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 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.
1. Information We Collect
I. Personally Identifiableuring the registration made viewable to other members of the community.lect and how we use itvacy and value the trust of our co
“Personally Identifiable Information” (“PII”), is information that identifies an individual personally, such as first and last name, date of birth, postal address, email address, and telephone number. This is information you voluntarily share with us directly either when you register or if you post in any of the communities. Examples of PII may include but are 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
Demographic or biographical information, such as age, gender, ethnicity, religion, and location (city, state, country) or in some instances IP address;
Condition/disease information, including diagnosis, symptoms (e.g., frequency, duration, severity), family history;
The 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;
Electronic health records;
Information shared via free text fields, such as in rareCourage, rareClinical, rareProfile, myBinder, rareChat, rareQuestionnaires;
Connections to other community members on the Site (e.g., rareCourage, rareTeams, rareMates) and people outside the Site shared by a community member.
Keep in mind, if you post PII on the Site, 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. We advise you 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
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. 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 website transfers to a user’s hard drive when a user visits the website. A cookie file can contain information such as a unique ID that the website 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.
How We Use this Information
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 community member.
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 PII to such government entities but may contact community members 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 community members 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 community members, 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 community members who Subscribe. rareLife solutions will communicate with you if you join our mailing list or otherwise accept to be notified of certain events and activities. You may opt out of receiving such communications at any time, as described in those communications and in Section 8 below.
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.
Non-PII Information may aggregate certain types of non-personally identifiable information 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 anonymizing this information so it is unlikely that someone could be identified. We may use non-PII to help us improve the Site, such as by analyzing usage of certain pages or functions on the Site.
How We Share Information
PII. We may share PII we collect through the Site under 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.Unless otherwise agreed to with a platform sponsor, rareLife solutions may share or sell certain anonymized information from onevoice 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.
Surveys.rareLife solutions 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. rareLife solutions 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 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 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, any affiliate, or its assets, we may transfer any and all information that we collect from Site users to the acquiring party or assignee.
Use of PII.Under certain circumstances, rareLife solutions may use your PII, including but not limited to:
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;
If a community member agrees to participate in a rareLife solutions-organized activity such as workshops or conferences, rareLife solutions may share the community member’s information (e.g., name, email) for the purpose of planning and executing the activity;
If a community member explicitly opts in to have their PII shared with a Collaborator, rareLife solutions will share the information as instructed by the community member (e.g. co-registration with a non-profit).
Collaborators.Community members should understand that the information they post on public areas of the Site may be shared in the various communities built by rareLife solutions, including other patients and third parties 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 rareLife solutions to use your PII for the purposes noted in this section by using our contact us form or by sending us an email at email@example.com. 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, for instance as a poster presentation at a medical conference
How Can You Manage PII We Maintain?
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 firstname.lastname@example.org. 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.
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 data security 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 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
Social Logins. To register and log in to your account, you also have the option of authenticating yourself with your existing profile on one of the following social networks, Facebook or Google+, and registering or logging in. The information we require for registration or login is (i) your name and (ii) your email address. After your express consent to the use of the transmitted and required data for purposes of registering and/or logging into the Site, your data will be stored by us and used for the purposes as stated within this Policy. [There is no link beyond the authentication process between your customer account created with us and your account on the corresponding social network.] In order to perform the authentication process for registration and login, your IP address is transmitted to the respective social network provider. We have no influence on the purpose and scope of data collection and on the further processing of the data by the respective provider of the social network. For further information, please read the data protection information of the respective provider:
1) Facebook Inc. – 1601 S California Ave, Palo Alto, California 94304, USA;
2) Google Inc. – 1600 Amphitheater Parkway, Mountainview, California 94043, USA; https://policies.google.com/technologies/partner-sites?hl=en and https://policies.google.com/privacy?hl=en&gl=us
Facebook Ads. We may use the “Facebook Pixel” from Facebook Inc. (1601 S California Ave, Palo Alto, California 94304, USA) on the Site. This allows user behavior to be tracked after they have been redirected to this Site by clicking on a Facebook ad. This enables us to measure the effectiveness of Facebook ads for statistical and market research purposes. The data collected in this way is anonymous to us, i.e. we do not see the personal data of individual users. You can object to the collection of data via Facebook pixels and the processing of your data to display Facebook Ads. To adjust the settings concerning which advertisements are shown on Facebook, you can visit Facebook’s dedicated page and follow the instructions to change the settings for usage based advertisements: https://www.facebook.com/settings?tab=ads. You can opt out of the collection and use of information for ad targeting by following Facebook’s published opt-out instructions.
YouTube. We have integrated YouTube videos into our Site, which are stored on http://www.YouTube.com and can be played directly from our Site. These are integrated in the “extended data protection mode”, i.e. no data about you as a user will be transmitted to YouTube, if you do not click on the videos to start playing them. Only when you play the videos will the data referred to in this paragraph be transferred to YouTube. We have no influence on this data transfer. If you are logged in to Google (an affiliate of YouTube), your information may be directly associated with your Google account. If you do not wish to be associated with your profile on YouTube, you must log out of Google before activating the button.
Google Analytics. Our Site uses Google Analytics, a web analysis service of Google, Inc., 1600 Amphitheatre Parkway, Mountain View, CA 94043 USA, www.google.com (“Google Analytics” or “Google”). Google Analytics employs cookies that are stored to your computer in order to facilitate an analysis of your use of the Site. The information generated by these cookies, such as time, place and frequency of your visits to our Site, including your IP address, is transmitted to Google’s location in the US and stored there. Google uses this information to analyze your use of our Site, to compile reports for us on internet activity and to provide other services relating to our Site. Google Analytics also offers a deactivation add-on for most current browsers that provides you with more control over what data Google can collect on websites you access. You can find additional information on how to install the browser add-on referenced above at the following link: https://tools.google.com/dlpage/gaoptout?hl=en.
Use of Site by Children
This site is not intended for use by children under the age of 16. In light of Article 8 of the GDPR, we have a parental consent form in place that the holder of parental responsibility needs to fill if the child is under the age of 16 years. Under Article 8(2), we make “reasonable efforts” to verify that consent has been given or authorized by the holder of parental responsibility. We also want to let the child know that he or she has a right to withdraw that consent once they are competent to make such a decision.
Transfers and Processing of PII
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 email@example.com with the subject line “Unsubscribe.” We will endeavor to comply with your request as soon as reasonably practicable.
Last Updated: September 12, 2019
rareLife solutions, Inc.
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