Code of Conduct

Last updated: October 2026

1. Our mission

Rarus Health supports people who live with rare and other complex, long-term conditions, their caregivers and the professionals who care for them. These conditions are hard to live with. They affect health, and also family life, work and money.

Rarus Health helps people take the next step between medical visits. Insight from that work can improve diagnosis, treatment and quality of life, but only when Rarus Health gathers and uses it ethically. Help comes first. Evidence comes second.

2. Our principles

• Empathy and respect. Rarus Health treats every person and organization as a partner. It respects their needs, their time and their context.
• Clarity and transparency. Rarus Health explains in plain language how it uses information, and what each person or partner receives in return.
• Security and compliance. Rarus Health protects information under Chile's Ley 19.628 and Ley 21.719, and under the applicable law in each country where it works.
• Diversity and inclusion. Rarus Health values the cultural, medical, digital and scientific diversity of the communities it serves.
• Openness, education and awareness. Open dialogue, continuous education and awareness are the most effective ways to improve rare and complex care.
• Responsible collaboration. Better care needs patients, caregivers, doctors, researchers, governments and industry to work together.

3. Our commitments

To patients, caregivers and patient communities

• Rarus Health never sells your personal information.
• No company or laboratory contacts you through Rarus Health without your explicit consent.
• Companies receive aggregated, anonymized insight only. They never receive information that identifies you.
• You decide. You give separate consent for each use of your information, and you can stop at any time.
• Patient organizations keep their own relationship with their members, and they receive their community's findings back.

To healthcare professionals

• Rarus Health does not sell identifiable clinical information.
• Information shared for research is anonymized. Rarus Health uses it only for the purposes that people agreed to.
• Rarus Health respects the role of every specialist, and it encourages collaboration across disciplines.
• Rarus Health does not deliver care, diagnose or prescribe. The care team makes clinical decisions.

To pharma, biotech and CROs

• Rarus Health provides aggregated, anonymized insight. It never gives direct access to individuals or to identifiable information.
• Rarus Health does not grant exclusive access to patients or communities. Equal access helps research and new treatments move faster.
• Every agreement follows principles of transparency, compliance and benefit to the community.

To governments and regulators

• Rarus Health complies with Chile's Ley 19.628 and Ley 21.719, and with the data protection law of each country where it works.
• Rarus Health cooperates with public programs that improve access to diagnosis, care and treatment for people with rare and complex conditions.
• Rarus Health keeps a record of every action taken on personal information, so that each use can be traced.

Within our team

• The Rarus Health team acts with integrity, confidentiality and respect toward the people it serves.
• The team receives ongoing training in ethics, privacy and cultural diversity.
• Every team member declares any conflict of interest, and Rarus Health resolves it openly.

4. Diversity and respect

Rarus Health brings together families, caregivers, professionals and scientists from different countries, cultures and digital backgrounds. Rarus Health values this diversity. It keeps an inclusive environment, free from discrimination and open to dialogue.

5. Your role

Every person and organization that works with Rarus Health is part of this community: patients, families, partners, researchers and team members. Trust makes the work possible. Rarus Health's responsibility is to protect that trust at all times.

6. Review and improvement

Rarus Health reviews this Code of Conduct regularly, so that it keeps pace with its community, with science and with the law. Suggestions are welcome through the contact page.