Legal
Privacy notice
The Rarus Health terms of service, privacy policy and consent documents.
Terms of Service
Welcome to Rarus Health! This document sets out the legal terms of use of our website, platform and services. Please read the Terms, because they set out your full ownership of your medical records, our rights to use the underlying data to provide the services to you, the rules to follow when you use the services, how to handle any dispute between us, and more.
The security of your medical records and respect for your privacy choices are the backbone of Rarus Health, and they are central to our mission of building a family-centered technology service. To learn more about how we protect your data, see our Privacy Policy.
Rarus Health SpA (“Rarus”, “we”, “us”, “our”) provides its services through its website at www.rarus.health (the “Site”), the digital platform at app.rarus.health and other technologies (together, the “Service”), subject to the following terms (as amended from time to time, the “Terms”). By using or accessing the Service, you accept these Terms. If you use the Service on behalf of a company or other entity, “you” includes you and that entity, and you represent and warrant that (a) you are an authorized representative of the entity with authority to bind the entity to these Terms, and (b) you accept these Terms on behalf of the entity.
Access to your records
Summary: Rarus provides a technology service that lets you collect your health records and information, organize and understand the data, and share the data with doctors and researchers when you choose. Please note that the Service does not include medical advice, and Rarus is not responsible for the completeness or accuracy of your health records.
Description. The Service is a technology platform that (i) lets you request access to copies of your historical health information and records (“Health Records”), (ii) asks patients and caregivers to enter health information directly, such as how they feel, what their symptoms are like or how their pain is managed, (iii) aggregates and standardizes (as far as possible) those Health Records, turns them into digital data (which we call “Data”) and analyzes them for possible uses, (iv) lets you decide whether and how to use and disclose those Health Records and Data to third parties, including caregivers, medical professionals and researchers, and (v) lets users post content and interact with other users.
Important notes about medical records and the Service:
- You represent and warrant that you own all rights, title and interest in the Health Records collected and in any data you provide to us (including any and all intellectual property rights in them), subject to the rights of Rarus set out below.
- Medical records are copies of documents from healthcare providers. If you believe that any information in your Clinical Record is inaccurate, it is your responsibility to take the matter up with the relevant healthcare provider(s) or health plan(s).
- Rarus has no control over the completeness, validity, consistency or accuracy of the content provided (or not provided) by you or by third parties (such as hospitals, other healthcare providers or health plans). You rely on any information provided by Rarus at your own risk.
- Not medical advice. THE SERVICE, INCLUDING ALL MATERIAL AND INFORMATION AVAILABLE THROUGH THE SERVICE, IS FOR INFORMATIONAL PURPOSES ONLY AND DOES NOT CONSTITUTE PROFESSIONAL MEDICAL ADVICE OR TREATMENT. Always seek the advice of your doctor or another qualified health provider. If you think you may have a medical emergency, call your doctor or emergency services immediately.
Your ownership of your records and the intellectual property rights of Rarus
Summary: You own your Content and Health Records, and you grant Rarus the right to use those records and information to provide the Service as described here. Likewise, Rarus owns its website and platform, the Service and other intellectual property rights, and grants you the right to use each of them as described here. For any copyright claim, follow the instructions below.
Ownership of Content and Clinical Records. You keep ownership of all medical records, documents and other materials that you upload (or that Rarus uploads on your behalf) or share through the Service (the “Content”). As a condition of using the Service, you grant us a non-exclusive, perpetual, irrevocable, royalty-free, worldwide, transferable and sublicensable license to access, use, store, reproduce, transmit, display, modify and adapt, and create derivative works from, your Content and Health Records.
Copyright claims. Rarus respects the intellectual property of others. If you believe that your work has been copied in a way that constitutes copyright infringement, please contact us at info@rarus.health.
Conditions for using the Rarus service
Summary: You must register and log in to use our Service, and you are responsible for protecting your account credentials. You are solely responsible for any content you create through the Service. Certain types of user-created content and conduct are strictly prohibited.
Your registration obligations. To use the Service, you must reside in Chile. If you are under 18, you may not use the Service unless your parent or guardian accepts these Terms on your behalf.
User account, password and security. You will be asked to register with Rarus to access certain features. You are solely responsible for keeping your account and password confidential. Notify Rarus immediately at info@rarus.health of any unauthorized use of your account.
User conduct. You agree to comply with all applicable laws and to use the Service only for your personal use. You will not try to bypass security features or use automated access tools.
How to resolve a dispute
Summary: We hope there will never be a dispute between you and Rarus. If there is one, please contact us first. If that does not work, the dispute will be resolved through arbitration.
Contact us first. Rarus is interested in resolving disputes amicably. Most concerns can be resolved by emailing info@rarus.health.
Arbitration agreement. If amicable efforts are unsuccessful, the party seeking arbitration must send a written Notice of Dispute to: Rarus Health SpA, San Sebastián 2957, Las Condes, Región Metropolitana, Santiago, Chile.
What happens on termination
Summary: The Terms remain in force until you or Rarus terminate them as set out in this section.
If you want to end your legal agreement with Rarus, you can do so by deleting your Rarus account. Email us at info@rarus.health.
Rarus may end its legal agreement with you at any time if you have breached the Terms, if the law requires it, or if providing the Service is no longer commercially viable.
Changes, warranties and limitations of liability
Summary: Unless expressly stated, the Service provided by Rarus is provided “as is” and without warranties. Rarus is not liable for certain types of damages.
Changes to the Service. Rarus reserves the right to modify or discontinue the Service, with or without notice.
You access and use the Service at your own risk. You understand and agree that the Service is provided to you “AS IS” and “AS AVAILABLE”.
Indemnification
Summary: You agree to indemnify and hold harmless Rarus and its affiliates, employees and agents from any loss arising from your use of the Service or your breach of these Terms.
By accepting these Terms and using the Service, you agree to indemnify and hold Rarus harmless from any loss, damage, liability and expense arising from or related to: (a) your breach of any of these Terms; (b) your violation of any third-party right; (c) any unauthorized use of the Service; (d) your Content; or (e) your negligence or willful misconduct.
Contact us
If you have any questions about these Terms, call us on (+56) 989189672 or email info@rarus.health.
Privacy Policy
When you use Rarus (website https://rarus.health/ and portal https://app.rarus.health/) (individually the “Site” and the “Portal”), the Rarus App (the “App”) and our Rarus SaaS (the “SaaS”), together the “Platform”, you will share with us information that matters to you. Because part of our commitment is to take good care of that data and to be transparent about how we use it, Rarus Health SpA (hereinafter “Rarus”) informs the Users of the Platform and of any of the services offered by Rarus about its policy on the processing and protection of the personal data that may be collected when Rarus provides its services or gives access to the Platform, as the data controller, tax ID (RUT) No. 77.692.188-2, duly represented by Elmira Safarova, both domiciled for these purposes at San Sebastián 2957, Las Condes, Santiago, Región Metropolitana, Chile. Please read the following Privacy Policy to learn more about the personal information we collect, how we use and share your personal information, and your rights.
Rarus provides a digital ecosystem (the “Rarus Health Ecosystem”) made up of a web-based digital Platform and an App that remotely connects individuals and their families who need medical care for the diagnosis and treatment of “rare” diseases (the “Consultant(s)”) with medical professionals and geneticists who offer online consultations (the “Specialists” and/or the “Professionals”) and with Hospitals and Clinics (the “Institutional Healthcare Providers”) specialized in the diagnosis and treatment of “rare” diseases. The Rarus Health Ecosystem also offers hospitals and clinics a SaaS (“Software as a Service”) that lets Institutional Healthcare Providers manage the Consultants' information and build multidisciplinary teams that comprehensively manage the needs of the Consultants and their families.
As the controller of the data registry or database, Rarus ensures that its activities and the services it provides fully comply with the standards of Law No. 19.496 on the Protection of Consumer Rights and Law No. 19.628 on the Protection of Private Life, and that they are carried out in full respect of Article 19 No. 4 of the Political Constitution of the Republic, following best practices on personal data.
Remember that the use of the Platform and of the available services, and in particular, for Users, the use of their scheduling link and customized reminders, all in one place, is at all times subject to the Terms and Conditions, which incorporate this privacy policy (the “Privacy Policy”). Any term used in this Privacy Policy without a definition has the meaning given to it in the Terms and Conditions.
First: Definitions
Processing activities: under letter o) of Article 2 of Law No. 19.628, “any operation or set of operations or technical procedures, automated or not, that make it possible to collect, store, record, organize, prepare, select, extract, compare, interconnect, dissociate, communicate, assign, transfer or cancel personal data, or to use it in any other way”.
Consultant or Patient: natural and/or legal persons who require medical care from a Specialist, which they access through the Platform, registering on it for that purpose. A Consultant is a person under 18, or their parents and guardians on their behalf, who registers on the Platform and/or the App and uses it for their own medical care needs, or someone who, through their session, requests a Specialist's medical services for third parties for whom they act as legal representative.
Content: any type of information, whether graphic or written, images, audio and video, including but not limited to location, announcements, comments, news, data, graphics, images or drawings, texts, design, schemes, maps and others, presented by Rarus in the Rarus Health Ecosystem (and/or any underlying software and computer code), as well as computer algorithms and programs, whether that Content is generated, provided or otherwise produced or supplied by Rarus, the Users of the Platform, the Clients or third parties.
Personal Data: under letter f) of Article 2 of Law No. 19.628, data “relating to any information concerning identified or identifiable natural persons”.
Sensitive Personal Data: under letter g) of Article 2 of Law No. 19.628, “personal data that refer to the physical or moral characteristics of persons or to facts or circumstances of their private life or intimacy, such as personal habits, racial origin, political ideologies and opinions, religious beliefs or convictions, physical or mental states of health and sexual life”.
Controller of the data registry or database
RARUS HEALTH SPA, a joint-stock company (sociedad por acciones), tax ID (RUT) No. 77.692.188-2, legally represented by Ms. Elmira Safarova, both domiciled at San Sebastián 2957, Las Condes, Santiago, Región Metropolitana, Chile, email Elmira@rarus.health.
If you have any questions about the processing of your personal data or about this Policy, you can contact us in any of the following ways:
- By emailing info@rarus.health.
- By sending us a written request to San Sebastián 2957, Las Condes, Santiago, Región Metropolitana, Chile.
Principles for processing personal data
The processing of personal data by Rarus is governed by the following principles:
- Lawfulness. All processing of personal data will be carried out in accordance with the law, that is, in compliance with the rules that regulate the processing of personal data and, in particular, Law No. 19.628.
- Purpose. Personal data will always be collected and processed for specific, explicit and lawful purposes.
- Proportionality. Rarus will only process the personal data that is necessary and relevant to the purpose for which it is processed.
- Time limitation. Personal data will be kept only for the reasonable and necessary time to fulfill the purpose of the processing.
- Quality. Rarus will take all necessary safeguards so that the personal data it processes is always accurate, complete and up to date in relation to the purposes of the processing.
- Accountability. All personal data processing activities will be carried out responsibly and in compliance with all the principles, duties and obligations established by law.
- Security. Personal data will be processed with all the technical and organizational measures needed to protect it against unauthorized processing, loss or destruction.
- Transparency and information. The Privacy Policy can be accessed through the Rarus website (https://rarus.health/).
- Confidentiality. Rarus will keep secret, and maintain due confidentiality about, the personal data it accesses.
Purpose of data processing
Personal Data is collected and processed to enable the use of the services available on the Platform and to facilitate communications. The Personal Data collected by Rarus will be processed for the following purposes:
- To provide the Services and perform the contract.
- To register the Account and authorize access to the Platform.
- To create, administer and manage the User's Account and/or Profile.
- To send reminders about scheduled sessions.
- To provide support and technical assistance.
- To process transactions, including payments.
- To improve and develop the Services and the Platform.
- To protect against or prevent fraudulent actions and to maintain security.
- To assist Users in maintaining their Account.
- To comply with legal or contractual obligations and to resolve disputes.
- For statistical and research purposes (anonymized data).
- To provide information about organizations and medical services.
- To enable connections between Users with similar health conditions (with explicit consent).
- To prevent the risk of money laundering and terrorist financing.
- To respond to requests from police, administrative and/or government authorities.
- To comply with any law, regulation, decree, summons or court order.
User rights
Law No. 19.628 grants the holders of personal data the “ARCO” rights (Access, Rectification, Cancellation and Objection).
Right of access: entitles data holders to request information about the data relating to them, its source and recipient, the purpose of the processing and to whom it is transmitted.
Right of rectification: allows the holder to require that erroneous, inaccurate, misleading or incomplete data be corrected.
Right of cancellation: allows the holder to require the deletion of their personal data if its storage lacks a legal basis or the data has expired.
Right to object: allows the holder to request that the processing of their personal data be stopped or limited at any time.
These rights are personal. The holder of the Personal Data can exercise them by emailing legal@rarus.health, stating the rights they wish to exercise and enclosing proof of identity. We commit to responding to your request within a maximum of 30 business days.
Security of personal data
Rarus will adopt the physical, technical, organizational and/or administrative security measures needed to protect Personal Data from unauthorized access, use and disclosure. We operate secure data networks protected by firewalls and password protection. However, no method of transmission over the Internet or of data storage is 100% secure.
The security of your data also depends on you. Do not share your Profile information or your password. If you believe that your interaction with us is no longer secure, notify us immediately at info@rarus.health.
Changes
Rarus may change this Privacy Policy at any time. Changes will be published through the Platform and/or notified by email. We invite you to review this Privacy Policy regularly to stay informed of any updates. By continuing to use our services after the changes take effect, you accept the new Privacy Policy.
Informed Consent
Rarus data bank
Rarus is creating a bank of medical and survey data collected from children and adults with special medical needs. These people have special health conditions, which may include physical, intellectual or developmental disabilities, as well as long-term medical conditions, including genetic ones. This group often requires care from multiple specialists.
Rarus is a new online platform that lets patients collect and store their medical records. Rarus turns these medical records into structured longitudinal data (the “Data Bank”) that patients (or their caregivers) can share with whomever they choose, whether for the patient's medical treatment or for observational research and clinical trials.
The Rarus Data Bank will be used for future research needs in collaboration with academic and pharmaceutical researchers.
Below you will find the informed consent to share information (including the medical record information in your Rarus profile, as well as survey data and data kept for research purposes) with the Data Bank. Please read it carefully. If you have any questions about this research, contact info@rarus.health.
What kind of research will be done with my data?
This consent is intended to let you give broad, advance consent to any research that has the potential to improve the understanding and the treatment or management of conditions with special medical needs, including neurodevelopmental disorders and syndromes, genetic diseases and undiagnosed disorders. For example, such research could include (but is not limited to) reporting on the natural history of disorders, serving as the control arm of a clinical trial, and studies that look for treatment patterns and outcomes in certain subgroups of patients or treatments.
Note: because you are giving broad advance consent to share your (or your child's) medical information with disease researchers, you will not receive advance notice of the specific research projects carried out with your (or your child's) data. Although this broad consent does not give you the opportunity to review research opportunities individually, it has the advantage of ensuring that your data (or your child's data) will be part of a wide range of research initiatives on your or your child's disease.
Who will have access to my data, and what kind of information is shared?
Rarus researchers will have access to the information in the data bank. In addition, Rarus may partner with other external researchers who are committed to developing knowledge and advancing treatments and cures for neurodevelopmental disorders.
You can also share your information with registered specialists and professionals to enable referral and support. For a specialist to access your personal data, you must send a link to your profile to the email address the specialist gives you, or tick the “I would like to receive advice” box.
In addition, Rarus users can take part in our Family Finder Program. By ticking the “I want to take part in the program to find families with the same mutation” box, you agree that another user with the same mutation may receive information about your (or your child's) personal data, provided that user also agrees to take part.
Are there any risks in taking part?
Because you are consenting to share your (or your child's) information and images, there is no risk of physical harm to you (or your child). However, there is a risk of loss of privacy.
Rarus takes a number of measures to protect your privacy. Before sharing information with external researchers, we remove common, obvious identifiers such as your name, address and telephone number. Rarus will enter into contracts with external research partners that prohibit them from re-identifying the information. For more information, see the Rarus privacy policy at www.rarus.health/privacy.
What are the benefits of taking part?
Research can take a long time to produce results, so taking part may not change your treatment options. But by taking part, you will help drive scientific discoveries about your disorder that could help others. It is your family's contribution to a deeper understanding of your disorder and to the development of medicines for it.
How long will my data be available to researchers?
Your (or your child's) information will be available in the database indefinitely, until you withdraw your consent to take part (see below) or, in the case of a child, until the child turns 18.
Do I have alternatives? Can I stop taking part?
Taking part is completely voluntary. You can decide not to take part and continue to enjoy all the benefits of having a Rarus profile. If you are not comfortable, we will contact you to offer you the opportunity to share information on a project-by-project basis.
You can withdraw your consent at any time by emailing info@rarus.health. The withdrawal may take up to thirty (30) days to take effect. Information that has already been shared with researchers cannot be recovered.
What should I do if I have questions or concerns?
Contact info@rarus.health if you have questions about this research. You can also contact Rarus Health SpA at San Sebastián 2957, Las Condes, Región Metropolitana de Santiago, Chile.
- Email: info@rarus.health
- Phone: (+56) 989 189 672
- Web: www.rarus.health
Consent for Communication by WhatsApp
What are you consenting to?
By accepting, you authorize Rarus Health SpA to contact you via WhatsApp at the phone number registered in your account. Messages may include:
- Appointment and clinical follow-up reminders
- Alerts about the health status of the patients in your care
- Communications from the case management team
- Rarus system notifications
Who processes your data
Rarus Health SpA (RUT 77.692.188-2), San Sebastián 2957, Las Condes, Santiago, Chile, is the data controller. Messages are transmitted through:
- Twilio Inc., messaging infrastructure provider
- Meta Platforms Ireland Ltd. (WhatsApp), messaging channel operator
Both act as data processors under contracts that prohibit them from using your data for any purpose other than providing the service.
Data used
- Your phone number registered with Rarus
- The content of the messages exchanged
- Delivery metadata (date, time, read status)
Retention
Messaging data is kept while your account is active. You can request deletion of your history by emailing info@rarus.health.
How to withdraw this consent
You can revoke this authorization at any time:
- By replying PARAR (stop) in the WhatsApp conversation with Rarus
- By turning off the “WhatsApp communication” option in the app's Settings
Revocation takes effect immediately for future messages and does not affect communication by email or other channels.
Your rights
Under Law No. 21.719 on the Protection of Personal Data, you have the right to access, rectify, erase and port your data, and to object to its processing. To exercise these rights, write to us at legal@rarus.health.
Authorization to Share Clinical Information by WhatsApp
What are you consenting to?
By accepting, you authorize Rarus Health SpA to send you, via WhatsApp, clinical information about the patients in your care who are registered on the Rarus platform. The information may include:
- Alerts and updates on the patient's health status
- Follow-up summaries and questionnaire results
- Communications from the nursing and case management team
- Medication or appointment reminders
Statement of legal authority
By accepting, you declare that you have legal authority to make health decisions for each of the patients in your care (for example, as mother, father, legal guardian or authorized caregiver). You undertake to:
- Not share the registered device with people who do not have that authority
- Notify Rarus if you lose legal authority over any of the patients
You take legal responsibility for this statement.
Who processes the data
Rarus Health SpA (RUT 77.692.188-2), San Sebastián 2957, Las Condes, Santiago, Chile, is the data controller. Messages are transmitted through:
- Twilio Inc., messaging infrastructure provider
- Meta Platforms Ireland Ltd. (WhatsApp), messaging channel operator
Both act as data processors under contracts that prohibit them from using the information for any purpose other than providing the service.
Categories of clinical data that may be shared
- The patient's health status and clinical progress
- Alerts about medication or pending appointments
- Follow-up questionnaire results
- Communications from the clinical team
WhatsApp messages will not include images of original medical documents or medical record numbers (MRN) in the body of the message.
Retention
Messages are kept for as long as the patient is active on the platform, in accordance with the Rarus Privacy Policy.
How to withdraw this authorization
You can revoke this authorization at any time:
- By turning off the “Share clinical information via WhatsApp” option in the app's Settings
- By emailing info@rarus.health
Revocation takes effect immediately for future messages. Messages already transmitted through Meta's servers cannot be recovered.
Your rights
Under Law No. 21.719 on the Protection of Personal Data, you have the right to access, rectify, erase and port your data, and to object to its processing. To exercise these rights, write to us at legal@rarus.health.