Effective Date: June 12, 2026

Odessia Health, Inc. (“Odessia,” “we,” “our,” or “us”) is a nonprofit organization working to expand access to clinical whole genome sequencing for children and families affected by suspected rare genetic diseases.

We know that health, genetic, and family information is sensitive. This Privacy & Data Use page explains what information we may collect, how we may use it, how we may share it, and the steps we take to protect it.

By using our website, contacting Odessia Health, submitting a form, making a donation, or otherwise communicating with us, you acknowledge that you have read this Privacy & Data Use page.

1. Information We May Collect

Odessia may collect information that you voluntarily provide to us, information submitted by a physician or other healthcare professional, information needed to coordinate our programs, and basic technical information collected through our website.

This may include:

Contact Information

We may collect your name, email address, phone number, country, city, preferred language, and any other contact information you choose to provide.

Family Inquiry Information

If you contact Odessia as a parent, guardian, family member, or caregiver, we may collect information about your child or family situation, including why you are seeking support, what type of help you are requesting, and whether your child is already under the care of a physician.

Physician Referral Information

If a physician or healthcare professional refers a patient to Odessia, we may collect referral information, clinical summaries, physician contact information, patient demographic information, and information needed to assess whether Odessia may be able to support access to genomic testing.

Health, Genetic, and Clinical Information

When voluntarily submitted by a family, physician, healthcare professional, laboratory, or partner, we may collect health-related, genetic, phenotype, medical history, prior testing, family history, and clinical information. This may include information about symptoms, diagnoses, suspected diagnoses, hospitalizations, prior genetic testing, medications, clinical notes, lab reports, imaging summaries, or other information relevant to evaluating whether whole genome sequencing may be appropriate.

Donation and Payment Information

If you make a donation or payment, we may collect donor contact information, donation amount, payment-related details, receipt information, and any information needed for donation processing, recordkeeping, tax, nonprofit, or compliance purposes. Payment information may be processed by third-party payment providers.

Communications With Odessia

We may keep records of emails, forms, messages, calls, meeting notes, and other communications with families, physicians, donors, partners, and other individuals or organizations.

Website and Technical Information

When you visit our website, we may collect limited technical information such as your IP address, browser type, device type, pages visited, referring website, time spent on pages, and other basic website usage information. We may use cookies or similar technologies to support website functionality and understand how visitors use our site.

2. How We Use Information

Odessia Health may use information for the following purposes:

• To respond to family, physician, donor, partner, and general inquiries

• To assess whether Odessia may be able to support a family or case

• To coordinate physician referrals and case review

• To support access to clinical whole genome sequencing or related genetic testing

• To communicate with treating physicians, families, genetic counselors, laboratories, logistics providers, and other appropriate partners

• To provide family-friendly education about genomic testing, possible results, limitations, costs, and next steps

• To help families and physicians understand pricing, payment options, and possible donor-supported access

• To coordinate sample kits, paperwork, logistics, documentation, and follow-up steps

• To support genetic counseling, clinical education, or result-related coordination when appropriate

• To process donations, send receipts, maintain donor records, and communicate with donors

• To evaluate, improve, and report on Odessia’s programs and impact

• To support responsible rare disease learning, program development, and access initiatives using de-identified information when appropriate

• To comply with legal, regulatory, tax, nonprofit, contractual, and operational obligations

• To protect the security, integrity, and lawful use of our website, programs, and records

Odessia does not sell or rent identifiable patient, family, physician, or donor information.

3. Health and Genetic Information

Odessia does not provide medical diagnosis, medical treatment, emergency care, or laboratory testing. Odessia supports access, education, coordination, and navigation around clinical genomic testing.

Health and genetic information submitted to Odessia may be used to help determine whether Odessia may be able to support a case, coordinate with the treating physician, assist with testing logistics, connect families and physicians with appropriate resources, and support follow-up related to genomic testing.

Genetic and health information can be sensitive. Odessia takes reasonable steps to protect this information and to limit access to individuals and partners who need it for appropriate coordination, support, or program purposes.

Odessia may not be a HIPAA-covered entity in all circumstances. However, we treat health and genetic information as sensitive and use reasonable administrative, technical, and organizational safeguards to protect it.

4. How We May Share Information

Odessia may share information only as reasonably necessary for the purposes described in this Privacy & Data Use page, with appropriate care and safeguards.

We may share information with:

Treating Physicians and Healthcare Professionals

We may share information with the physician or healthcare professional involved in a case, including the referring physician, treating physician, clinical geneticist, genetic counselor, or other care team members involved in evaluating or supporting the patient.

Genetic Counseling and Clinical Support Partners

We may share information with genetic counselors, clinical advisors, or other qualified professionals who support case review, education, testing coordination, or result-related support.

Laboratory Partners

We may share information with accredited or qualified laboratory partners when needed to coordinate testing, sample kits, documentation, reporting, interpretation, billing, or other testing-related processes.

Logistics and Operational Partners

We may share information with trusted vendors or partners who support sample shipping, document management, secure communications, translation, scheduling, technology, storage, payment processing, accounting, legal, compliance, or other operational needs.

Donor-Supported Access and Program Partners

When appropriate and consistent with consent, safeguards, and patient benefit, Odessia may use or share limited information with donors, sponsors, foundations, or access partners to support funding, program evaluation, or reporting. Odessia does not share identifiable patient or family information with donors or sponsors unless specifically authorized or required for a lawful and appropriate purpose.

Legal, Compliance, or Safety Purposes

We may share information when required by law, regulation, court order, legal process, nonprofit obligations, tax requirements, or other compliance obligations. We may also share information when necessary to protect the safety, rights, property, or security of Odessia, families, physicians, partners, or others.

5. De-Identified Information and Rare Disease Learning

Odessia may use or share de-identified information to support rare disease learning, program evaluation, access planning, donor reporting, public health understanding, natural history summaries, research planning, partnership development, or other mission-aligned activities.

“De-identified” means that information has been modified or summarized so that it does not directly identify a patient, family, physician, or individual.

Examples of de-identified information may include general information about symptoms, suspected disease areas, diagnostic timelines, testing pathways, outcomes, access barriers, or program impact.

Odessia does not sell identifiable patient or family information. Any use of de-identified information will be handled in a way that is intended to protect privacy and support Odessia’s charitable mission.

6. Donor Information

If you donate to Odessia, we may use your information to process the donation, provide receipts, maintain records, communicate with you about Odessia’s work, comply with tax and nonprofit obligations, and support donor stewardship.

Odessia does not sell donor information.

Odessia may publicly recognize donors only with permission or in a way consistent with donor preferences and applicable law.

7. Cookies and Website Analytics

Odessia may use cookies and similar technologies to support website functionality, improve user experience, understand website traffic, and improve our content.

You can control cookies through your browser settings. Some website features may not function properly if cookies are disabled.

Odessia seeks to use tracking and analytics tools responsibly, especially on pages where families, physicians, or others may submit sensitive information.

8. Third-Party Websites and Services

Our website may link to third-party websites, platforms, forms, payment processors, laboratories, resources, or partner services.

Odessia is not responsible for the privacy practices, security, content, or policies of third-party websites or services. We encourage you to review the privacy policies and terms of any third-party service you use.

9. International Users

Odessia may communicate with families, physicians, laboratories, donors, and partners in different countries.

If you contact Odessia from outside the United States, your information may be processed, stored, or accessed in the United States or in other countries where Odessia, its service providers, or partners operate.

Privacy laws may differ from country to country. Odessia will take reasonable steps to handle information responsibly and in accordance with applicable obligations.

10. Data Security

Odessia takes reasonable administrative, technical, and organizational measures to protect information from unauthorized access, use, loss, misuse, disclosure, alteration, or destruction.

However, no method of transmission over the internet, email, messaging, or electronic storage is completely secure. We cannot guarantee absolute security.

Families, physicians, and partners should avoid sending sensitive information through unsecured channels unless instructed otherwise.

11. Data Retention

Odessia may retain information for as long as reasonably needed to fulfill the purposes described in this Privacy & Data Use page, support patient and physician coordination, maintain program records, comply with legal or nonprofit obligations, resolve disputes, enforce agreements, or protect Odessia’s rights and operations.

When information is no longer needed, Odessia may delete, archive, de-identify, or securely retain it in accordance with applicable requirements and operational needs.

12. Children’s Privacy

Odessia Health’s work may involve information about children with suspected rare genetic diseases. However, our website is intended for use by adults, including parents, guardians, caregivers, physicians, donors, and partners.

Odessia does not knowingly collect personal information directly from children without appropriate parent, guardian, physician, or legal authorization.

If you believe a child has submitted information directly to Odessia without appropriate authorization, please contact us.

13. Your Choices and Rights

Depending on your location and applicable law, you may have the right to request access to personal information, correction of inaccurate information, deletion of certain information, restriction of certain uses, withdrawal of consent, or information about how your data is used.

Some requests may be limited by legal, medical, nonprofit, operational, recordkeeping, or safety obligations.

To make a privacy request, please contact us using the information below. We may need to verify your identity before responding.

14. No Medical Advice

Information on this website and communications with Odessia are not medical advice and should not be used to diagnose, treat, prevent, or manage any medical condition.

Families should speak with a qualified healthcare professional regarding medical symptoms, testing decisions, diagnosis, treatment, or care.

Odessia does not replace the treating physician.

15. Changes to This Privacy & Data Use Page

Odessia may update this Privacy & Data Use page from time to time. If we make changes, we will update the effective date above.

Your continued use of our website or communication with Odessia after updates are posted means you acknowledge the updated Privacy & Data Use page.

16. Contact

If you have questions about this Privacy & Data Use page or how Odessia handles information, please contact:

Odessia Health, Inc.
Email: privacy@odessiahealth.com

For general inquiries, you may also contact: contact@odessiahealth.com