About Rarus Health

Making invisible care visible, valued and supported.

Families do that work at home, mostly alone, and no medical record shows it. Rarus Health exists to support that work and to make it visible.

A mother holds her young daughter on her lap on a sofa at home.

Rarus Health’s mission is to make care continuity possible for families living with complex conditions, by combining human care coordination, community knowledge and responsible AI.

Why did Rarus Health start?

Healthcare is organized around appointments, but families live with complex conditions every day. Much of the work that keeps care moving happens outside the healthcare system, carried by patients, caregivers and communities, often without support or recognition. After more than 20 years in pharmaceutical research and Medical Affairs, Elmira Safarova saw the same gap again and again: nobody knew what happened to a patient between medical visits. She founded Rarus Health to close it.

Rarus Health is an international company based in Santiago, Chile. It works with patient organizations and families in Chile and Colombia. Work with healthcare providers in Brazil is in development.

What principles guide Rarus Health?

Trust comes before information.

People share their situation with someone who already helps them, not with a form. Patients and caregivers test each new part of the service before other families receive it. The Care Manager role exists because families asked for it.

Help first. Evidence second.

Every contact must give the person something useful. Insight for partners is a result of good care.

People decide, with consent.

Every participant gives informed consent. A Care Manager handles what needs a person, and the care team makes clinical decisions.

Read about data protection

Who is behind Rarus Health?

Dr. Elmira Safarova

Dr. Elmira Safarova

Founder and Chief Executive Officer

PhD in molecular biology. Research and Medical Affairs at AstraZeneca and Johnson & Johnson. Member of the IRDiRC Scientific Committee.

Elmira Safarova on LinkedIn
Fernanda Pérez

Fernanda Pérez

Medical Lead and Care Manager

Nurse specialized in neuromuscular conditions. Director of Science and Education at FECHER. She lives with a rare disease herself.

Fernanda Pérez on LinkedIn
Andrey Pogodin

Andrey Pogodin

Co-founder and Chief Technology Officer

Former Software Development Manager at Amazon. He leads the WhatsApp service, the AI and the security of patient information.

Andrey Pogodin on LinkedIn
Mariela Siri

Mariela Siri

Patient Communities and Insights Lead

Leads the partnerships with patient organizations and the reports that go back to each community.

Mariela Siri on LinkedIn

The Care Managers

Care Managers are the people that families write to. Some are nurses. Others are experienced caregivers. They help families with practical next steps and do not deliver care.

Where has Rarus Health presented its work?

Start-Up Chile
ANID
AstraZeneca A.Catalyst Network, Mexico's Health Innovation Hub
ChileMass

Research presented

Barcelona · October 2024

World Orphan Drug Congress

Rarus Health presented the poster “Enhancing Rare Disease Management Through Digital Tools and Education using simulated clinical cases”. The poster describes a course on rare diseases for nurses in Latin America.

Read the poster (PDF)
Chile · 2024

CERPOHCHI

CERPOHCHI is the Congress of Rare, Infrequent and Orphan Diseases of Chile. Rarus Health presented the poster “Rarus Health, un asesor digital que puede ayudar a familias y personas con enfermedades raras”. The poster reports interviews with patients, caregivers and professionals in Chile.

Read the poster (PDF, in Spanish)
Boston · April 2025

World Orphan Drug Congress

Rarus Health presented the poster “A Patient-Centered Methodology for Real-World Data Collection in Rare Genetic Diseases: Development and Pilot Implementation”.

Read the poster (PDF)
2024

Startup Booth Competition

Rarus Health won the competition at the World Orphan Drug Congress Europe.

What healthcare cannot see, it cannot value.

Rarus Health is making the invisible work of care visible, so it can finally be measured, supported and valued.

Talk to Rarus Health

Tell us where patients get lost in your program or your clinic.

Identify where patients drop out

Are you a leader of a patient organization? See how Rarus Health works with partners.