Privacy Policy


Rachael raras understands how important privacy is to our users and we are committed to protecting it. This Privacy Policy will tell you what information we collect about you and your use of the services we provided through our websites or mobile applications (our “Services”). It will explain the choices you have about how your personal information is used and how we protect that information. We urge you to read this Privacy Policy carefully because by using our Services you agree to the collection and use of information as set forth in this Privacy Policy. If you do not agree to this Privacy Policy, please do not use our Services.

What information we may collect Personal Information You are under no obligation to provide personal information, with the caveat that your refusal to do so may prevent you from using certain portions of the Services. Rachael raras may collect certain personal information about you, including without limitation, your title, name, e-mail address, occupation, specialty, affiliation to an academic or medical institution, office address, phone and fax numbers. If you have any hesitation about providing such information to us and/or having such information displayed to other members in our network or otherwise used in any manner permitted in this Privacy Policy and the User Agreement, you may refrain from providing this information. The only information that you are required to provide in order to use our Services is your full name and valid email address. By default, your email address is not published in your Rachael raras profile, and we will use it only to send you product updates and information, as well as various marketing communications that we generate. You can, of course, opt not to receive these updates at any time. If an authorized third party, such as an administrator in your office, completes the registration form on your behalf, both you and that third party will be deemed to have accepted all of the terms of this Privacy Policy. Personal information is collected at the following times:

  • When you register to our Services or update your profile, we ask you to provide your name, occupation, specialty, office phone, email address and password. We collect this information and use it to verify that you are a professional healthcare provider to ensure that our network is comprised by trusted members from the medical community. If we are unable to verify your credentials from the information you provide at registration, you may be required to send us additional evidence to support your affiliation to an academic or medical institution or board certifications.
  • When you set up or update your network profile, you have an option to provide additional information that will be linked to your account. You can add such information by updating your profile yourself or importing such information from third party vendors. Providing such information is completely optional, but enables you to better identify yourself and communicate with your peers. All of the information that you voluntarily provide and choose to include in your profile, will be accessible to other members of our network.
  • When you invite others to join our Services, you may enter their names and email addresses, which Rachael raras will use to send your invitation including a message that you write.
  • When you contact customer support, we may collect information in order to, among other things, accurately categorize and respond to your inquiry and deliver appropriate service levels.
  • When you use our mobile application to locate services near you, we collect your precise geolocation data.
  • When you select to receive educational and event communications or product or other related communications.

Non-Personal Information

In addition to the “personal information” we may collect, when using our Services, we may collect “non-personal information” about your use of our Services, including pages and screens that you view, your computer’s internet protocol (IP) addresses, your computer’s or mobile device operating system and/or browser type, the identity of your internet service provider, referring/exit pages, date/time stamp, and click-stream data (i.e., a list of pages or URLs visited). In some cases, this non-personal information may be collected automatically and stored in log files to help us analyze trends, administer the site, track users’ movements around the site, and gather demographic information about our user base as a whole. However, this information, when used together with cookies (see “cookies” below for more information) or if collected when you are logged-in, may be used to link or associate such information to your personally identifiable information.


A cookie is a tiny data file which resides on your computer which allows us to recognize you as a User when you return to our website using the same computer and web browser. Like the information you enter at registration or when you update your Profile, cookie and log file data is used to customize your experience on our website. One type of cookie, known as a “persistent” cookie, is set once you’ve logged in to your Rachael raras account. The next time you visit our website, the persistent cookie will allow us to recognize you as an existing User so you will not need to log in before using the Service. However, if you log out of our website you will need to re-enter your password the next time you visit in order to log in to your account. We use cookies to improve the quality of our Service by storing User preferences and tracking User trends. 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.

Posts that contains Personal Health Information (“PHI”)

Although our systems are designed to be HIPAA- and GDPR-compliant and to comply with other privacy laws, we do not intend to collect or maintain information that would associate with a specific patient or individual. However, some information which contains PHI, such as facial photos, names, dates of birth and other identifiers, may be shared with us when you post data on message boards and forums, submit search queries through our Services, or when you store information on your personal account. Special provisions regarding our treatment of data containing PHI, are included in our Data Sharing and Protection Policy, which has been reviewed and approved by our Scientific Advisory Board’s Steering Committee and which is incorporated into this Privacy Policy by reference and supersedes any conflicting provisions contained herein. WE URGE YOU TO READ OUR DATA SHARING AND PROTECTION POLICY AND SECTIONS PERTAINING TO HOW WE TREAT PHI POSTED OR UPLOADED THROUGH OUR SERVICES IN USER AGREEMENT BEFORE DOING SO. IF YOU DO NOT AGREE TO THESE TERMS, DO NOT POST ANY PHI THROUGH OUR SERVICES.

Consent to Rachael raras receiving and processing information about you

Certain information you provide to Rachael raras may reveal, or allow others to identify, your nationality, ethnic origin, religion or other aspects of your private life, and more generally about you. Please be aware that in providing information to Rachael raras for the purposes of opening your user account, you are expressly and voluntarily accepting the terms and conditions of this Privacy Policy and Rachael raras’s User Agreement. The supplying of all such information by you to Rachael raras, including all information deemed “sensitive” by applicable law, is entirely voluntary on your part. You have the right to withdraw your consent at any time, in accordance with the terms of this Privacy Policy and the User Agreement, but please note that your withdrawal of consent will not be retroactive.

How we may use the information we collect

Our Service help medical professionals to search and reference genetic syndromes, maintain their personal search history archive and facilitate easy peer communication. The information you choose to provide on our Service is used to help you describe yourself to other Users. Other information, that does not personally identify you as an individual, is collected by Rachael raras from Users (such as, for example, patterns of utilization) and is exclusively owned by Rachael raras. This information is used by us to continue to improve our Services and to perform our marketing communications.

Rachael raras’s communications to you

Rachael raras will communicate with you through email, through notices posted on our website or mobile applications or through other means available through our Service, including mobile alerts, push notifications, text and other forms of messaging. If we send any communications to you via the carrier service with which you have a mobile communications subscription or otherwise have access, you understand you will pay any service fees associated with any such access (including text messaging charges for messages to your mobile device). Our communications to you include emails which help us operate and improve our Services, respond to your comments and questions and provide customer service, provide and deliver products and services you request, send you related information, including confirmations, invoices, technical notices, updates, security alerts, and support and administrative messages, better understand you so that we may tailor messaging and services based on your interests, preferences, needs and specialties, send you information via email about products and services or new features, we or our selected partners offer.

By accepting the terms of this Privacy Policy, you are giving us your consent to receiving these communications. You may revoke your authorization to participate in these features of our Services at any time by sending a request to

Customized content

Information provided to Rachael raras (or to third parties with whom it offers combined services) is also used to customize your experience on our Services. For example, you can build a personal search history archive and display them in the context of references to a new case.

Sharing information with third parties

Rachael raras does not share any Personal Information it collects with any third party, except for the following:

We may employ other companies or individuals to perform functions on our behalf. Examples of those service providers include analyzing data, providing marketing assistance and providing customer service. They may receive limited access to personal information needed to perform their functions, but they may not use it for other purposes.

We may use third-party software for various internal needs. Examples of those software include file storage services, analytics tools, infrastructure platforms and communication platforms.

We may segment our Users by occupation, specialty, geographic location or other similar information and provide information from your public profile as part of our Services and product offerings.

When you use the Rachael raras Service through our websites, newsletters, mobile apps or other medium, you may be presented with advertisements or opportunities to engage in informational programs consisting of sponsor-selected content. Examples of these programs include sponsored news alerts or branded or unbranded discussion groups. All sponsored programs are labeled clearly as sponsored. When you choose to engage with a sponsored program, such as engaging with a commercial client’s sponsored news alert, you give your consent to provide the sponsor of such content with your personal information and information about the type of engagement (e.g., whether you viewed, interacted with or requested information about such promotional content).

By accepting the terms of this Privacy Policy, you are consenting to receiving these communications. You may revoke your authorization to participate in these features of our Services at any time by sending a request to dpo@Rachael

Surveys and Polls

As a User, you may receive requests to participate in market research, including polls and surveys submitted by other Rachael raras members. If you participate in surveys and polls offered through our Services, the information you provide may be visible to others. By accepting the terms of this Privacy Policy, you are consenting to receiving these communications. You may revoke your authorization to participate in these features of our Services at any time by sending a request to

Communications to other users

Communications you initiate through Rachael raras, such as a colleague invitation sent to a non-User or posting a comment in any of our professional message boards, will list your name in the message.

In order to diffuse the information posted in our public message boards to a wider audience, we may, from time to time, collect your postings and group them together to use in a specific publication, print, electronic mailing or other public dissemination. When your postings are used in this fashion, they may be edited to fit with the general content of the publication being prepared.

Legal Disclaimer

It is possible that we may need to disclose personal information when required by law, such as responses to civil or criminal subpoenas, or other requests by law enforcement personnel. We will disclose such information when we have a good-faith belief that it is necessary to comply with a court order, ongoing judicial proceeding, subpoena, or other legal process or request to Rachael raras brought in any country throughout the world, or to exercise our legal rights or defend against legal claims.

Disclosures to others

We may also disclose your personal and other information you provide, to another third party as part of a reorganization or a sale of the assets of Rachael raras. Any third party to which we transfer or sell Rachael raras’s assets will have the right to continue to use the personal and other information that you provide to us in accordance with this Privacy Policy, our Terms of Use, and any applicable data protection and privacy regulations.

What choices you have for your information

We may keep the personal information we collect from you indefinitely, unless and until you request to change or remove this information.

You have a right to modify or remove the data about you, which has been collected pursuant to your decision to become a User.

Modifying information

You can review the personal information you provided us and make any desired changes to the information you publish, or to the settings for your account, including your email and contact preferences, at any time by emailing us at dpo@Rachael You may also make these changes by updating your Profile on our website or mobile application. Please be aware that even after your request for a change is processed, we may keep a copy of the information which you originally provided to us in our backup and/or archival copies of our database, as we deem necessary to comply with our legal obligations, resolve disputes, and enforce our agreements.

Changing your selections about our communications to you.

You can choose to receive educational and event communications or product or other related communications from us at any time, or, if you have chosen to receive such communications, choose to unsubscribe from receiving such communications at any time, by updating your communications preferences at or by emailing us at As long as you continue to use the Services, we will continue to communicate to you any information relating to product support, operations and updates and related communications. If you wish to stop those communications, you will be requested to close your account and stop using our services.

Removing information and Closing Your Account

You can also request to remove your personal information and close your account at any time. If you do so, we will remove all of the information that you have provided to Rachael raras from our publicly viewable database, as well as any private information that you have stored with us and we will deny further access to our Services. We may retain certain data contributed by you if we believe it may be necessary to prevent fraud or future abuse, or for legitimate business purposes, such as analysis of aggregated, non-personally identifiable data, account recovery, or if required by law. We may also retain and use your information if necessary to provide the Services to other Users. For example, just as an email you may send to another person through an email service provider resides in that person’s inbox even after you delete it from your sent files or close your account, communications to other Users, as well as your contributions to professional message boards, may remain visible to others after you have closed your account. Similarly, other information you have shared with others, or that other Users have copied, may also remain visible. Rachael raras disclaims any liability in relation to the deletion or retention (subject to the terms herein) of information or any obligation not to delete the information, subject to applicable data protection and privacy regulations. Rachael raras does not control when search engines update their cache, which may contain certain public profile information that has since been removed from Rachael raras’s publicly viewable database.

To request that we close your account and remove your information, please send your request to Please send your request using an email account that you have registered with Rachael raras under your name. You will receive a response within ten (10) business days of its receipt.

What your obligations are

As a User, you have certain obligations toward the other Users with whom you will be communicating. Certain of these obligations are imposed by applicable law and regulations, and others have become commonplace in user-friendly communities of like-minded members:

  • You must, at all times, respect the terms and conditions of the then-current Privacy Policy and the User Agreement. This includes respecting all intellectual property rights which may belong to third parties (such as photographs).
  • You must not download or otherwise disseminate any information which may be deemed to be injurious, defamatory, violent, offensive, racist, sexist or xenophobic, or which may otherwise violate the purpose and spirit of Rachael raras and its community of Users.
  • You must not provide information to Rachael raras and/or other Users which you believe might be injurious or detrimental to your person, professional or social status.
  • You must use our public message boards for clinical, not commercial use. While we do allow selected client outreach for market research, these messages have a distinct format and channel-level opt-outs to protect our members. Those found soliciting, scamming, or spamming other members will be removed or suspended from the network at our sole discretion.
Any violation of these guidelines may lead to the restriction, suspension or termination of your account by Rachael raras, as we take these principles seriously and consider them to be the basis on which our Users adhere to the Rachael raras website and the services which it offers.

How we protect your information

We are committed to protecting the security of your information. Therefore, we use a variety of industry-standard security technologies and procedures to help protect such information from unauthorized access, use, or disclosure. We also require you to enter a complex password to access your personal account. In addition, we protect your information from unauthorized physical access by storing such information in a controlled facility. Our servers are located in the Republic of Ireland; however, we may store and process information in the United States and other countries, all in accordance with applicable data protection and privacy regulations. Finally, except as provided elsewhere in this Privacy Policy, we limit access to personal information collected by us to only those persons (including employees and contractors) who have a business need for such access, have signed confidentiality agreements with Rachael raras, and in the case of contractors and/or service providers agree to adhere to applicable data protection and privacy regulations.

Protecting your personal information is also your responsibility. We ask you to be responsible for safeguarding your passwords used to access our Services. You should not disclose your account information to any third party and should immediately notify us of any unauthorized use of your password.

EU Data Compliance

Rachael raras complies with the EU General Data Protection Regulation (GDPR) in regards to collecting, processing, and transferring the personal data of our EU Users from the EU to non-EU areas, primarily the US and/or areas providing an adequate level of data protection according to the EU (i.e. Andorra, Argentina, Canada (to commercial organizations), Faeroe Islands, Guernsey, Israel, Isle of Man, Jersey, New Zealand, Switzerland and Uruguay). As necessary, Rachael raras uses “Standard Contract Clauses” (SCC), as determined by the EU data directives’ model clauses, to enter into agreements in the EU (with sites and/or third party vendors) to ensure compliance with applicable EU data protection and privacy regulations for our EU Users. If you have any questions or concerns, please send an email to

Changes to this Privacy Policy

We reserve the right to modify this Privacy Policy at any time, so please make sure to review this frequently. Our most updated Privacy Policy is posted on our website and accessible through our mobile applications. We will also notify you by email or in-app notifications. All changes will apply with immediate effect. By continuing to use our Service after notice of changes have been sent to you or published on our website or through the Service, you are consenting to the changes.

last update: May 25, 2018

Website users are requested to consult the Privacy Policy applicable to this website..

This site is provided by Cognoscere TI SA de CV

Address: Independencia No. 58, Col. Centro, San Martín Hidalgo, Jalisco, México


Phone: (33) 39 15 87 19