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Privacy Notice

RareiTi respects your privacy and is committed to protecting your personal data. This privacy notice will tell you about how we handle your personal data when you visit our website and/or engage with RareiTi and how the law protects you.

Visitors to this Website

When you visit our website, we may process your personal data. We do this through the “Contact Us” feature of the website. In addition, we use cookies to generate information about how you use our website. You can find more information about how we use cookies on our website here.

Personal data collected from visitors to our website include IP address, browser setting, website behavior, and other information we may collect via cookies. If you complete the “Contact Us” form, we collect your name, email address, and other information you may provide. We use this information for marketing purposes and to assist us in responding to your request for information.

If you are a website visitor, we will process your data on the basis of legitimate interests and consent or if we have a legal obligation to do so. We retain your data for no longer than 7 years. Data received via our website may be shared between our locations in the United States and the United Kingdom.

To protect your data, we have implemented appropriate technical and organizational measures to protect your data against accidental loss, destruction or damage and to prevent unauthorized or unlawful access or disclosure.

You have the right to obtain confirmation as to whether or not RareiTi processes your personal data, and where that is the case, to obtain access to your personal data. You have the right to exercise your data rights and to request that RareiTi remove your data or restrict its processing by contacting our Data Protection Officer by email at info@rareiti.com.

Patients and Caregivers

RareiTi collects and processes your personal information that is provided by you, as a patient or caregiver of a patient enrolled in a Managed Access program managed by RareiTi. During your enrollment process, you contracted with RareiTi for the collection and processing of personal information generated by you in your use of our services including our app and website (together the “Sites”). This Privacy Notice is provided to you in accordance with applicable privacy laws including, but not limited to, laws implementing the General Data Protection Regulation 2016/679 (GDPR) (the “Data Privacy Laws”). It applies only to residents in the European Economic Area, Switzerland and the UK who use our services and it explains what information you provide to us and how we use your information to provide our services to you. This Privacy Notice is not applicable to patients or caregivers in any other territory other than in the European Economic Area, Switzerland and the UK.

By providing you with access to and collecting your data using the Sites, RareiTi is a data controller under applicable Data Privacy Laws. We include in this Privacy Notice a summary of your rights to control how we use your personal information. RareiTi is a service provider to patients enrolled in the Managed Access programs managed by RareiTi and, therefore, we aim to put you, the patient or caregiver, in control of how your personal information is used by us. Your continued use of our services indicates your acceptance of the updated Privacy Notice applicable at that time.

Your personal information

RareiTi needs to collect and process personal information in order to deliver services that provide medicines and support under regulated activities. We run joint programmes with our patients’ referring physicians/centres and the pharmaceutical manufacturers as part of our pharmacovigilance and drug safety obligations. We also participate in regulated activities that require the sharing of your data for clinical evidence purposes outside of a clinical trial in accordance with applicable laws. All personal data is processed exclusively for pharmacovigilance purposes and only where relevant and appropriate to document, assess and report your adverse event(s) properly in accordance with our pharmacovigilance and our obligations under the Data Privacy Laws.

Your personal information includes any information relating to you where you are identified or from which you are identifiable. This includes your name, contact information, information about where you work and, if applicable, where you live and your use of our services.

We summarise below details of what categories of personal information we have collected, where we got it from, and with whom we have shared it:

Category of Personal Information Collected

Source

Purpose for Collection

Categories of Recipients

Contact information: such as name, address, and phone number

From you when you enrolled in a Managed Access program managed by us or when you contact us to update your information.

To communicate with and respond to you to help manage your care while you are on the therapy covered by the Managed Access program, or to meet legal obligations.

We may share this information with our employees involved in your care, your healthcare provider or partners directly contracted to RareiTi  to deliver services to you under the Managed Access program.

Browsing and usage information: such as your IP address, MAC address or other device identifier, the kind of browser or device you use, pages and content that you visit on the Sites, what you click on, the state and/or country from which you access the Sites, date and time of your visit, and web pages you linked to our Sites from.

Our Sites and your interactions with the Sites, including through the use of cookies and other tracking technologies explained further below

To evaluate usage of the Sites and improve performance and  our services; to protect the security and integrity of the Sites and our business, such as preventing fraud, hacking, and other criminal activity or to meet legal obligations.    

Our service providers who help us with fraud protection and website analytics

Health information: such as whether you’ve taken your treatment, how you’re feeling, and your sense of wellbeing

Our Sites and your interactions with the Sites, including your daily response to questions asked on the Sites

To provide the pharmaceutical companies who are our customers with insights into how patients daily lives are affected by treatment; to aid your healthcare provider in providing you with care while you are taking treatment.; and to meet legal or regulatory obligations.

Our customers, your healthcare provider, and employees and others who are contracted to RareiTi to deliver services to you under the Managed Access program.

We collect various types of personal information from different sources, including:

  • Information you provide to us when you complete your registration or provided by your healthcare provider or clinician;
  • Information you provide directly to us when you register to use our app or visit the RareiTi Website or obtain services provided by us;
  • Information we collect about your use of our services and the app.

Some of the personal information you provide to us may include health information or other sensitive or special categories of personal information.

Information We Collect Automatically

When you visit the Sites, we may collect certain information from you, including your Internet Protocol (IP) address, MAC address, browser type, operating system, device-identifying information, the specific web pages visited during your connection, and the domain name from which you accessed the Sites. In addition, we may collect information about your browsing behavior, such as the date and time you visit the Sites, the areas or pages of the Sites that you visit, the amount of time you spend viewing the Sites, the number of times you return to the Sites and other clickstream data. We may also use non-personal or aggregated information for statistical analysis, research, and other purposes.

Like many commercial websites, we analyze how visitors use our Sites through what is known as “cookie” technology or similar tracking tools. A cookie is a small text file that is placed on your computer when you access the Sites and allows us to recognize you each time you visit the Sites. We may use cookies to: (1) allow you to use the Sites without having to re-enter your user name and password; (2) enhance or personalize your Site usage and experience; (3) monitor Site usage; (4) manage the Sites; and (5) improve the Sites and our services. Only essential cookies are collected by us during the use of the Sites, and the contract you entered into upon enrollment in the Managed Access program included consent to the placement of essential cookies.

We may combine the information we collect through cookies, web beacons, or other technology tools with other information we have collected from you or information from other sources.

What we do with your personal information

All the personal information we collect from you or generated by you is used to provide the services.

RareiTi will safeguard the privacy and security of special categories of personal information as required under Data Privacy Laws.

We are also permitted to process your personal information to comply with our legal and regulatory obligations and/or our contractual obligations to you to provide the services to you, to manage your account with us and to manage any technical issues or support requests that may arise.

Some of your personal information is processed by us in the United States and the United Kingdom and is held on servers in the United Kingdom. By using our services, you expressly acknowledge and agree to the transfer of some of your personal information to the United States and United Kingdom, which may both have a lower standard of data privacy laws in your country of residence. When we transfer personal information provided by the Data Privacy Laws between our United Kingdom and United States affiliates, we rely on the standard contractual clauses approved by the European Commission (https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A32004D0915). Our security measures are described below in this Privacy Notice.

Other than with biotech companies (where we rely on healthcare or provision of medicinal products and research processing grounds), we do not allow any third parties to have access to your personal information, except as required or permitted by applicable laws or in accordance with the Privacy Notice. We may disclose your personal information to our subcontractors, agents, or payment service providers (who may be located in the United States) that we contract with to assist us in providing the services, provided that any such subcontractors or agents shall agree in writing to comply with the privacy and security standards described in this Privacy Notice.

There may be instances when we disclose your personal information to other parties:

  • to comply with the law or respond to compulsory legal process (such as a search warrant or court order) or request for information from a regulator or otherwise for legal purposes;
  • to verify or enforce compliance with the policies governing the services; or
  • to protect the rights, property or safety of RareiTi, or any of our respective affiliates, business partners, or customers or otherwise in the legitimate business interests of RareiTi and/or our affiliates and in accordance with Data Privacy Laws.

We may share your personal information with other business entities in connection with the sale, assignment, merger or other transfer of all or a portion of RareiTi‘s business to that business entity.

In any instance where we need to share your personal information with third parties, we will restrict the nature and categories of personal information to that which is required to comply with our contractual obligations to you or our legal and/or regulatory requirements. We may de-identify your personal information to protect your privacy.

How we protect your personal information

RareiTi understands that storing data in a secure manner is essential. RareiTi stores personal information and other data using reasonable physical, technical and administrative safeguards to secure data against foreseeable risks, such as unauthorised use, access, disclosure, destruction or modification. Although we make good faith efforts to store the information we collect in a secure operating environment that is not available to the public, we cannot guarantee complete security. Further, while we work to ensure the integrity and security of our network and systems, we cannot guarantee that our security measures will prevent third-party “hackers” from illegally obtaining this information.

How long we keep it

We retain your personal data relating to the use of our services for the duration of the customer relationship and for seven years after the customer account is closed for legal, regulatory, audit and tax requirements. After this period has expired, the personal information relating to your account and your use of the services will be deleted.  Any personal information which you have provided to us for marketing purposes will be kept until you notify us that you no longer wish to receive this information.

Children

The Sites are not directed to and should not be used by children (i.e. those aged below 18 years) unless specifically authorised by the relevant parent or guardian and clinician. We do not knowingly collect any personal information from children without verifiable parental/guardian consent. If you believe that a child has provided personal information to us without this consent, please contact us promptly as described below, and we will endeavor to investigate and delete such information from our systems.

What are your rights?

You have the right to ensure your personal information is accurate. To make changes to your contact and other account information, please contact us in one of the following ways:

Send an email to our Data Protection Officer, Alexandra Evans, at info@rareiti.com.

If you wish to raise a complaint on how we have handled your personal information, you can contact us at info@rareiti.com, and we will investigate the matter and respond to you promptly.

If you are not satisfied with our response, you can complain to any applicable data privacy authority in your country of residence.

If you have any questions about this Privacy Notice or about RareiTi’s handling of your information, please contact info@rareiti.com.

Customers and healthcare providers

RareiTi collects and processes your personal information that is provided by you, as our customer or as a healthcare provider served by our customer. You have contracted with RareiTi for the collection and processing of personal information generated by you in your use of our services including our portal and website (together the “Sites”). This Privacy Notice is provided to you in accordance with applicable privacy laws including, but not limited to, laws implementing the General Data Protection Regulation 2016/679 (GDPR) (the “Data Privacy Laws”). It applies only to residents in the European Economic Area, Switzerland and the UK who use our services and it explains what information you provide to us and how we use your information to provide our services to you. This Privacy Notice is not applicable to customers or prospective customers in any other territory other than in the European Economic Area, Switzerland and the UK.

By providing you with access to and collecting your data using the Sites, RareiTi is a data controller under applicable Data Privacy Laws. We include in this Privacy Notice a summary of your rights to control how we use your personal information. RareiTi is a service provider to our customers and, therefore, we aim to put you, a user of our Sites, in control of how your personal information is used by us. Your continued use of our services indicates your acceptance of the updated Privacy Notice applicable at that time.

Your personal information

RareiTi needs to collect and process personal information in order to deliver services that provide medicines and support under regulated activities. We run joint programmes with our patients’ referring physicians/centres and the pharmaceutical manufacturers as part of our pharmacovigilance and drug safety obligations. We also participate in regulated activities that require the sharing of your data for clinical evidence purposes outside of a clinical trial in accordance with applicable laws. All personal data is processed exclusively for pharmacovigilance purposes and only where relevant and appropriate to document, assess and report your adverse event(s) properly in accordance with our pharmacovigilance and our obligations under the Data Privacy Laws.

Your personal information includes any information relating to you where you are identified or from which you are identifiable. This includes your name, contact information, information about where you work and, if applicable, where you live and your use of our services.

We summarise below details of what categories of personal information we have collected, where we got it from, and with whom we have shared it:

Category of Personal Information Collected

Source

Purpose for Collection

Categories of Recipients

Contact information: such as name, address, and phone number

From users when they visit the Sites, call us, contract for service or for access to the Sites, or otherwise interact with us

To communicate with and respond to our customers and the healthcare providers of patients served by our customers to help manage the care of patients receiving therapy from our customer, or to meet legal obligations.

We may share this information with employees or partners directly contracted to RareiTi to deliver services to our customer and to the healthcare providers of patients serviced by our customers’ products.

Browsing and usage information: such as your IP address, MAC address or other device identifier, the kind of browser or computer you use, pages and content that you visit the Sites, what you click on, the state and/or country from which you access the Sites, date and time of your visit, and web pages you linked to our Sites from.

Our Sites and your interactions with the Sites, including through the use of cookies and other tracking technologies explained further below

To evaluate usage of the Sites and improve performance and  our services; to protect the security and integrity of the Sites and our business, such as preventing fraud, hacking, and other criminal activity or to meet legal obligations.    

Our service providers who help us with fraud protection and website analytics

We collect various types of personal information from different sources, including:

  • Information you provide directly to us when you register to use our portals or visit the RareiTi Website or obtain services provided by us;
  • Information we collect about your use of our services and the portals.

Information We Collect Automatically

When you visit the Sites, we may collect information about your browsing behavior, such as the date and time you visit the Sites, the areas or pages of the Sites that you visit, the amount of time you spend viewing the Sites, the number of times you return to the Sites and other clickstream data. We may also use non-personal or aggregated information for statistical analysis, research, and other purposes.

Like many commercial websites, we analyze how visitors use our Sites through what is known as “cookie” technology or similar tracking tools. A cookie is a small text file that is placed on your computer when you access the Sites and allows us to recognize you each time you visit the Sites. We may use cookies to: (1) allow you to use the Sites without having to re-enter your user name and password; (2) enhance or personalize your Site usage; (3) monitor Site usage; (4) manage the Sites; and (5) improve the Sites and our services. Only essential cookies are collected by us during the use of the Sites, and the contract you entered into with RareiTi included consent to the placement of essential cookies.

If you choose, you can set your browser to reject cookies or you can manually delete individual cookies or all of the cookies on your computer by following your browser’s help file directions. However, if your browser is set to reject cookies or you manually delete cookies, you may have some trouble accessing and using some of the pages and features that are currently on our Sites, or that we may put on our Sites in the future. Note that browser-management tools for cookies are outside of our control and we cannot guarantee their effectiveness.

We may combine the information we collect through cookies, web beacons, or other technology tools with other information we have collected from you or information from other sources.

What we do with your personal information

All the personal information we collect from you or generated by you is used to provide the services.

RareiTi will safeguard the privacy and security of special categories of personal information as required under Data Privacy Laws.

We may send you communications by email which we consider may be of interest to you from time to time, based on our assessment of our or your legitimate interests. You have the right to tell us that you do not want to be contacted by us with these communications.

We are also permitted to process your personal information to comply with our legal and regulatory obligations and/or our contractual obligations to you to provide the services to you, to manage your account with us and to manage any technical issues or support requests that may arise.

Some of your personal information is processed by us in the United States and the United Kingdom and is held on servers in the United Kingdom. By using our services, you expressly acknowledge and agree to the transfer of some of your personal information to the United States and United Kingdom, which may both have a lower standard of data privacy laws in your country of residence. When we transfer personal information provided by the Data Privacy Laws between our United Kingdom and United States affiliates, we rely on the standard contractual clauses approved by the European Commission (https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A32004D0915). Our security measures are described below in this Privacy Notice.

We do not allow any third parties to have access to your personal information, except 1) as required or permitted by the terms of our contract with you, 2) as required or permitted by applicable laws or 3) in accordance with the Privacy Notice. We may disclose your personal information to our subcontractors, agents, or payment service providers (who may be located in the United States) that we contract with to assist us in providing the services, provided that any such subcontractors or agents shall agree in writing to comply with the privacy and security standards described in this Privacy Notice.

There may be instances when we disclose your personal information to other parties:

  • to comply with the law or respond to compulsory legal process (such as a search warrant or court order) or request for information from a regulator or otherwise for legal purposes;
  • to verify or enforce compliance with the policies governing the services; or
  • to protect the rights, property or safety of RareiTi, or any of our respective affiliates, business partners, or customers or otherwise in the legitimate business interests of RareiTi and/or our affiliates and in accordance with Data Privacy Laws.

We may share your personal information with other business entities in connection with the sale, assignment, merger or other transfer of all or a portion of RareiTi‘s business to that business entity.

In any instance where we need to share your personal information with third parties, we will restrict the nature and categories of personal information to that which is required to comply with our contractual obligations to you or our legal and/or regulatory requirements. We may de-identify your personal information to protect your privacy.

How we protect your personal information

RareiTi understands that storing data in a secure manner is essential. RareiTi stores personal information and other data using reasonable physical, technical and administrative safeguards to secure data against foreseeable risks, such as unauthorised use, access, disclosure, destruction or modification. Although we make good faith efforts to store the information we collect in a secure operating environment that is not available to the public, we cannot guarantee complete security. Further, while we work to ensure the integrity and security of our network and systems, we cannot guarantee that our security measures will prevent third-party “hackers” from illegally obtaining this information.

How long we keep it

We retain your personal data relating to the use of our services for the duration of the customer relationship and for seven years after the customer account is closed for legal, regulatory, audit and tax requirements. After this period has expired, the personal information relating to your account and your use of the services will be deleted.  Any personal information which you have provided to us for marketing purposes will be kept until you notify us that you no longer wish to receive this information.

Notification of other RareiTi services and products

We would like to use your name and email address to inform you of our future or related services, offers and similar products. If you provide us with your consent to receive marketing communications, we will offer the right to unsubscribe in each electronic communication. This information is not shared with third parties and you can unsubscribe at any time via email or through our Sites.

What are your rights?

You have the right to ensure your personal information is accurate. To make changes to your contact and other account information, or to opt out of receiving marketing communications, please contact us by sending an email to our Data Protection Officer, Alexandra Evans, at info@rareiti.com.

If you wish to raise a complaint on how we have handled your personal information, you can contact us at info@rareiti.com, and we will investigate the matter and respond to you promptly.

If you are not satisfied with our response, you can complain to any applicable data privacy authority in your country of residence.

If you have any questions about this Privacy Notice or about RareiTi’s handling of your information, please contact info@rareiti.com.

COVID-19 Response

The COVID-19 pandemic is having significant impact on clinical trials globally. Many trials face suspension or closure due to clinical priorities and the impact of social distancing and quarantine.

Clinical trial patients with a rare condition face great challenges; being part of a clinical trial when living with a rare condition can often be the only lifeline available, offering the chance to access novel therapies that could improve life enormously. During the pandemic, not being able to access novel therapies could have a major negative impact on health, disease progression and mortality. In addition, progress toward an approved therapy should not have to be completely stalled because of a lack of ability to collect relevant data.

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