Effective Date: 13 February 2026

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TeleRare Health, LLC (“TeleRare,” “we,” “us,” or “our”) operates the TeleRare Health® Platform and related services that support genetics and rare disease care delivered by clinical entities such as TeleRare Health Medical PC, other affiliated medical professional corporations and our partner healthcare systems. 

This Privacy Policy explains how TeleRare Health, LLC collects, uses, discloses, and safeguards information when you use: 

• Our websites (including www.telerare.com, www.telerarehealth.com, and any subdomains), 

• Our patient and caregiver portals and related intake workflows, 

• Our clinician-facing portals and tools, and 

• Our AI-enabled intake and documentation support services 
  (collectively, the “Platform”). 

This Privacy Policy does not govern how TeleRare Health Medical PC or other professional entities deliver clinical care or exercise their own rights and obligations as “covered entities” under the Health Insurance Portability and Accountability Act (“HIPAA”). Those activities are described in their respective Notices of Privacy Practices, which you should review carefully. 

By using the Platform, you acknowledge that you have read and understand this Privacy Policy. 

 

1. Our Role and Relationship to Clinical Entities 

1.1 Management Services Organization and Platform Provider 

TeleRare Health, LLC is a Management Services Organization (MSO) and the creator and operator of the TeleRare Health Platform. We: 

• Provide the technology, operations, and support for tele-genetics and related services; 

• Integrate with health information exchanges and other clinical systems; and 

• Offer AI-enabled tools that assist with information gathering, clinical documentation and other services. 

We do not independently practice medicine or provide clinical services. Clinical services are delivered by: 

• TeleRare Health Medical PC and affiliated professional corporations,  

• Other professional corporations with whom we have a relationship, and 

• Clinicians employed by or affiliated with our partner healthcare systems. 

1.2 Business Associate Role 

When we handle Protected Health Information (“PHI”) on behalf of TeleRare Health Medical PC or a partner healthcare system, we act as a Business Associate under HIPAA and are bound by: 

• Business Associate Agreements (BAAs) with those covered entities, and 

• Applicable federal and state law. 

In these contexts, our use and disclosure of PHI is governed by those BAAs and the covered entity’s Notice of Privacy Practices, not only by this Privacy Policy. 

When we handle other data (e.g., website analytics, account preferences, general communications), we do so as an independent data controller, and this Privacy Policy applies directly. 

 

2. Information We Collect 

The information we collect depends on how you interact with the Platform. Some of this information may be PHI when it relates to your past, present, or future physical or mental health or condition, the provision of healthcare, or payment for healthcare. 

2.1 Information You Provide Directly 

We may collect information that you or your authorized representative provide, such as: 

• Account and contact information 

• Name, postal address, email address, phone number. 

• Relationship to the patient (e.g., self, parent, legal guardian, caregiver). 

• Demographics and identifiers 

• Date of birth, sex, gender, language preference. 

• Medical record number(s), insurance information, and other identifiers needed to locate your records or coordinate care. 

• Clinical intake and history information 

• Information you provide through online forms and questionnaires, including: 

• Personal and family medical history, including genetic history. 

• Prior diagnoses, treatments, medications, and surgeries. 

• Symptoms, concerns, and goals for care. 

• Information you provide during phone-based intake, including conversations with our AI-enabled intake agent and human staff. 

• Consent selections 

• Your choices regarding: 

• Being contacted about research opportunities. 

• How we may communicate with you (e.g., email, text), as allowed by law. 

• For example, you may choose: 

“Yes, you may contact me about research opportunities for this patient. Participation is voluntary and requires a separate consent. I can opt out at any time. Consent is not required to receive care.” 

• Support communications 

• Information you provide when you contact us for support, feedback, or general inquiries. 

2.2 Information We Receive From Clinical Partners and Other Sources 

We may receive information about you from: 

• TeleRare Health Medical PC and partner healthcare systems 

• Demographics, contact details, medical record numbers, encounter history, diagnoses, and other clinical documentation necessary to support your genetics care. 

• Health Information Exchanges (HIEs) via Metriport or similar services 

• We submit queries to HIEs using identifiers you or your clinicians provide (such as name, date of birth, prior addresses, and other attributes). 

• We may obtain records from multiple organizations, but: 

• Not all providers participate in HIEs; and 

• If certain identifiers are missing or incomplete (for example, an old address), some records may not be retrieved. 

• Clinical laboratories and other clinical partners 

• Information related to genetic tests that your clinician orders, including: 

• Order details, specimen status, and test results (including genetic results). 

• Note: the laboratory is responsible for obtaining genetic testing consent from you; we compile and send a clinical information packet to support the test order, interpretation, and insurance justification. 

• Payers, benefit administrators, and similar entities 

• Eligibility and coverage information, plan details, and payment/claims data, when needed to support your care. 

• Vendors and service providers 

• Technical and operational information from vendors providing: 

• Telephony and AI-enabled intake services, 

• Messaging and email services, 

• Hosting and infrastructure, 

• Analytics and security. 

2.3 Information Collected Automatically 

When you use the Platform, we may automatically collect: 

• Device and usage information 

• IP address, browser type and settings, device type and identifiers. 

• Pages viewed, links clicked, time spent, and other usage patterns. 

• Log files recording access times, errors, and system performance. 

• Cookies and similar technologies 

• Small data files stored on your device that help us: 

• Keep you logged in, 

• Remember preferences, 

• Understand how the Platform is used. 

• In the future, we may use cookies and similar technologies for analytics and, where appropriate, to improve user experience. If we do, we will update this Privacy Policy and, where required, provide additional notice or choices. 

2.4 Derived, De-Identified, and Aggregated Data 

We may create: 

• De-identified data: Information that no longer identifies you, consistent with applicable law (for example, HIPAA de-identification standards). 

• Aggregated data: Information about groups or cohorts that does not identify individual patients. 

We may use and share de-identified and aggregated data for any lawful purpose, including analytics, product improvement, quality measurement, and research, as permitted by our BAAs and applicable law. 

 

3. How We Use Information 

We use the information we collect for the following purposes, depending on our role and your relationship with us. 

3.1 Operating and Improving the TeleRare Health Platform 

We use information to: 

• Create and manage patient/caregiver, clinician, medical assistant, and administrator accounts. 

• Support scheduling, intake, documentation, and other workflows. 

• Compile clinical information into packets for genetic testing laboratories, so they can: 

• Process orders, 

• Interpret results, and 

• Justify tests to insurers. 

• Provide secure access to clinician portals and tools. 

• Maintain system functionality, performance, and reliability. 

3.2 Supporting Clinical Care (Business Associate Functions) 

On behalf of TeleRare Health Medical PC and partner health systems, we use PHI to: 

• Retrieve, compile, and present records from HIEs and other sources for clinical review. 

• Facilitate telehealth encounters (when conducted through the Platform), including: 

• Audio/video connections, 

• Recording or transcription where enabled by the clinician or health system. 

• Use AI-assisted tools to: 

• Conduct telephone intake interviews to gather and organize patient history. 

• Generate call transcripts and draft clinical notes from telehealth encounters and other communications. 

• Provide a consolidated, editable draft that clinicians review, modify, and sign as the official clinical documentation. 

Important: AI-generated call transcripts and draft notes assist clinicians but are not themselves the legal medical record. The clinician-signed note and related documentation in the clinical system constitute the medical record. 

3.3 Research Contact and Outreach 

If you (or your legal representative) affirmatively consent for us to contact you about research opportunities for the patient, we may: 

• Identify individuals who might qualify for specific research or clinical trial opportunities based on: 

• Diagnoses, 

• Clinical characteristics, 

• Genetic findings, and 

• Other relevant criteria derived from PHI. 

• Contact you with information about these opportunities, either: 

• Directly, or 

• Through a third party acting on our behalf under appropriate contracts (including BAAs where required). 

Participation in any research is voluntary and will always require separate, study-specific consent. Declining or withdrawing from research contact does not affect your access to clinical care. 

You may opt out of research contact at any time, as described in Section 8 (Your Choices). 

3.4 Communications With You 

We may use your information to: 

• Send appointment reminders, intake instructions, and operational updates. 

• Provide information about account changes, security alerts, and Platform changes. 

• Respond to your questions and support requests. 

• Provide educational content related to your care, where allowed by law. 

We do not use your PHI for marketing any unrelated products or services in ways that are prohibited by HIPAA. 

3.5 Security, Compliance, and Legal Purposes 

We may use information to: 

• Monitor for security threats, fraud, or misuse of the Platform. 

• Enforce our Terms of Use and other agreements. 

• Comply with legal and regulatory obligations. 

• Respond to lawful requests from law enforcement or regulators, when required by law. 

 

4. How We Share Information 

We share information only as described in this Privacy Policy, in our BAAs, and as permitted or required by law. 

4.1 With Clinical Entities Providing Your Care 

We share information with: 

• TeleRare Health Medical PC and its clinicians, and 

• Other professional corporations with whom we have a relationship and their clinicians, and 

• Partner healthcare systems and clinicians 

to support treatment, payment, and healthcare operations, including: 

• Telehealth encounters and documentation, 

• Genetic test ordering and follow-up, 

• Coordination of care with your other providers, and 

• Participation in health information exchanges. 

These entities govern their own use and disclosure of PHI through their Notices of Privacy Practices. 

4.2 With Clinical Laboratories and Other Clinical Partners 

We may share information with: 

• Clinical genetic testing laboratories (for example, clinical summary packets supporting a test order), 

• Other clinical partners involved in your care (e.g., specialty clinics, pharmacies, imaging centers), 

when necessary to: 

• Facilitate orders and results, 

• Support billing and coverage, 

• Provide or coordinate your care. 

The laboratories are responsible for obtaining consent for testing and for their own privacy practices. 

4.3 Health Information Exchanges (HIEs) 

Through our integration with HIE services (for example, via Metriport), information about you may be: 

• Retrieved: From participating providers and systems for your treatment. 

• Contributed: As part of our obligation to support two-way exchange of meaningful clinical data. 

Information contributed to HIEs may include: 

• Encounter information (e.g., that you had a visit with a clinical geneticist on a given date). 

• Clinician-signed notes and pertinent clinical data, which may include genetic information when relevant to your care. 

We do not contribute: 

• AI-only artifacts such as raw call transcripts and draft notes that are not part of the official medical record. 

Once information is shared with an HIE, it is governed by the policies of the HIE and the participating covered entities. If you do not want your information included in these HIE-based functions, you should not use the TeleRare Health Platform. You may still be able to receive care directly from providers in our network outside the Platform, in which case the applicable provider or affiliated professional will manage your information. 

4.4 With Service Providers and Vendors 

We engage third-party vendors to support the Platform, including: 

• Telephony and AI-enabled intake services, 

• HIE gateway services, 

• Hosting and infrastructure, 

• Data storage and backup, 

• Analytics and security tools, 

• Email and messaging services, and 

• Customer support tools. 

Where these vendors handle PHI on our behalf, we enter into BAAs and require them to: 

• Use PHI only as necessary to provide services to us; 

• Implement appropriate security measures; and 

• Comply with applicable privacy and security obligations. 

4.5 With Research Partners (Limited to Outreach) 

If you have consented to research contact, we may: 

• Work with research and pharmaceutical partners to identify general eligibility criteria for studies, and 

• Contact you with information about such studies. 

We (or our assigned agent) communicate directly with you; we do not provide your identifiable PHI to research sponsors unless and until you provide the required research-specific consent or authorization. 

4.6 Legal, Safety, and Corporate Transactions 

We may disclose information: 

• To comply with applicable law, regulation, legal process, or governmental request. 

• To protect the rights, property, or safety of you, us, our users, or others. 

• To investigate or prevent fraud or abuse. 

In the context of a corporate transaction, such as a merger, acquisition, financing, reorganization, bankruptcy, or sale of assets: 

• Your information (including PHI we hold as a Business Associate) may be transferred to a successor or affiliate, subject to: 

• Applicable law, and 

• Contractual obligations (including BAAs and Notices of Privacy Practices). 

• Any successor will be required to honor the privacy commitments that apply to your information or inform you of any material changes and obtain any additional consents required by law. 

If TeleRare Health, LLC ceases operations: 

• We will coordinate with TeleRare Health Medical PC and other covered entities to ensure that PHI is either: 

• Transferred to appropriate custodians (for example, TeleRare Health Medical PC or partner systems), or 

• Securely destroyed, consistent with legal and regulatory requirements. 

• Non-clinical personal information we control will be handled in accordance with applicable law and this Privacy Policy, including secure deletion where appropriate. 

 

5. Cookies, Analytics, and Online Tracking 

At present, our use of cookies and similar technologies is limited and focused on making the Platform function correctly and securely. 

In the future, we may use: 

• Necessary cookies to enable basic Platform functions. 

• Functional cookies to remember preferences. 

• Analytics tools to better understand how our Platform is used and to improve user experience. 

If and when we expand our use of cookies or analytics: 

• We will update this Privacy Policy, and 

• Where required by law, we will provide additional notice and choices (for example, cookie banners or preference centers). 

You may be able to disable or limit some cookies through your browser settings, but doing so may affect the functionality of the Platform. 

 

6. Data Retention 

We retain information for as long as reasonably necessary to: 

• Provide and improve the Platform, 

• Support clinical care and healthcare operations on behalf of covered entities, 

• Comply with legal, regulatory, and contractual obligations, and 

• Resolve disputes and enforce our agreements. 

Because we act as a Business Associate for TeleRare Health Medical PC and other covered entities: 

• Retention of PHI is often driven by the covered entity’s record retention requirements and our BAAs. 

• We may retain system logs and other operational data for shorter or longer periods as needed for security, auditing, and compliance. 

When information is no longer needed and is not required to be retained, we will securely delete, de-identify, or aggregate it, consistent with our obligations and industry standards. 

 

7. Security 

We use administrative, technical, and physical safeguards designed to protect the confidentiality, integrity, and availability of the information we maintain, including PHI. These measures include: 

• Encryption of data in transit and at rest where appropriate; 

• Access controls and role-based permissions; 

• Logging and monitoring of system activity; 

• Vendor due diligence and security requirements; and 

• Policies and training for our workforce. 

No system can be guaranteed to be 100% secure. We continually work to improve our security posture and will notify applicable covered entities—and, where required, affected individuals—in the event of a breach of unsecured PHI or other personal information. 

 

8. Your Choices and Rights 

Your specific privacy rights depend on your relationship with us and the laws that apply where you live. 

8.1 HIPAA Rights 

Your HIPAA rights regarding PHI—including the right to access, amend, or receive an accounting of disclosures—are primarily exercised through: 

• TeleRare Health Medical PC, if they are your provider, and/or 

• Other covered entities that provide your care. 

Please consult the relevant Notice of Privacy Practices and contact those entities directly to exercise your HIPAA rights. We support them in fulfilling these requests as their Business Associate. 

8.2 Research Contact Preferences 

If you have consented to be contacted about research opportunities for a specific patient, you may withdraw that consent at any time. This is how: 

• Log into the TeleRare Portal 

• Navigate to the patient’s page 

• Find the “Consents” section and uncheck any boxes where you no longer wish to provide consent 

Withdrawing consent for research contact will not affect your access to clinical care or the TeleRare Health Platform. 

8.3 Communication Preferences 

You may: 

• Update your contact information and certain communication preferences through the Platform (where available), or 

• Contact us to adjust how we communicate with you (e.g., preferred email, phone). 

For certain types of communications (for example, appointment reminders and essential service messages), we may be required to contact you even if you adjust some preferences, as permitted by law. 

8.4 Website and Analytics Preferences 

If and when we implement broader use of cookies or analytics tools, we will provide ways to manage your preferences, either: 

• Through browser settings; and/or 

• Through in-Platform tools (such as cookie banners or preference centers). 

 

9. Children, Minors, and Adults With Legal Guardians 

The TeleRare Health Platform supports care for: 

• Children and adolescents, and 

• Adults who have legal guardians for medical purposes. 

In these cases: 

• Accounts, consents, and communications are typically managed by the parent, guardian, or other authorized representative. 

• By acting on behalf of a minor or adult patient, you represent that you have the legal authority to do so. 

Our general website and informational content are not directed to children who are acting on their own without a parent or guardian. We do not knowingly permit unemancipated minors or adults lacking legal capacity to independently create accounts or consent to services without appropriate legal authority. 

 

10. International Users 

The TeleRare Health Platform is currently intended for use in the United States and is hosted in the United States. All patients must be physically present in the U.S. state where their clinicians are licensed at the time of any encounter with a clinician. 

11. No Emergency Services 

The TeleRare Health Platform, including any AI intake calls, messaging features, and telehealth tools, is not designed for emergency or urgent situations. 

• If you are experiencing a medical emergency, call 911 or go to the nearest emergency room immediately. 

• Do not rely on the Platform, our AI intake agent, or any TeleRare clinician communication for emergency care. 

 

12. Changes to This Privacy Policy 

We may update this Privacy Policy from time to time to reflect changes in our practices, technologies, legal requirements, or other factors. 

• When we make changes, we will clearly mark this version as “Superseded” at the top of the page and provide a link to the main Privacy Policy page where you will be able to find links to the current version and all historical versions. 

• We will provide notice of material changes by at least: 

• Sending an email to the contact email address associated with your account; and 

• Posting the updated Privacy Policy on our website. 

The current version and all historical versions of this Privacy Policy are available at: 

https://www.telerare.com/privacy 

Unless otherwise required by law, the updated Privacy Policy will become effective when posted. Your continued use of the Platform after the effective date of the updated Privacy Policy constitutes your acknowledgement of the changes.  

 

 

13. Contact Us 

If you have questions or concerns about this Privacy Policy, or if you wish to exercise any rights described here, you may contact: 

TeleRare Health, LLC 

(651) 317-4926 

contactus@telerarehealth.com 

3265 Lexington Ave S, Eagan, MN 55121, USA