Partners | Rarus Health and Patient Organizations

You already support your community. Let’s do it together.

Rarus Health partners with rare disease patient organizations in Latin America. The organizations know their communities. Rarus Health adds Care Managers, practical tools and follow-up over WhatsApp.

Rarus Health starts with rare diseases in Latin America, where families often coordinate complex care across fragmented systems and patient communities hold essential practical knowledge.

How does Rarus Health strengthen a community?

Rarus Health works with a patient organization in two ways. Rarus Health builds each tool with the leaders of the organization, for one condition and one country, and respects their time and expertise.

Support members without carrying every task alone.

Rarus Health and the organization work together on recurring questions, relevant information and support along the care journey: a reference guide for the condition, a medical emergency card, and a Care Manager on WhatsApp who helps members with practical next steps.

Understand your community as it changes.

The organization receives consent-based reports on the needs, geography, barriers and trends of its own community, subject to data availability and privacy safeguards.

Partnership scope and resources are agreed case by case with each organization.

How does the organization keep trust and control?

Rarus Health partners with patient organizations under formal agreements. The organization introduces Rarus Health to its community and keeps its own relationship with its members. Rarus Health does not replace the organization.

The organization stays independent.

It keeps its name, its voice and its members. A company that funds a deployment does not direct it.

Rarus Health does not bypass the organization to reach its members.

Rarus Health reaches a community through its leaders and never sells access to its members.

The community receives its evidence back.

Rarus Health returns a community’s findings in its own language, as a commitment in the agreement.

The person decides.

Each participant gives separate consent for each use of their information, and can stop at any time.

Which patient organizations does Rarus Health work with?

Rarus Health works with patient organizations in Chile and Colombia. Each organization below has an agreement with Rarus Health and agreed to appear on this page.

Pompe disease, Colombia

Fundación Pompe Club Internacional

Fundación Pompe Club Internacional is a community of people who live with Pompe disease and their families. Rarus Health and the leaders of the foundation build practical tools for those families.

Example medical emergency card for a person with Pompe disease, with invented details

Guía Integral de Referencia para la Enfermedad de Pompe

This is a complete reference guide to Pompe disease, written in Spanish. Rarus Health developed the guide with the leaders of the community and with the care team. Families and professionals can use the same guide.

Medical emergency card

A person with Pompe disease prepares a personal emergency card. The card holds the diagnosis, the treating center, the emergency contact and the instructions that a doctor must not miss. The person saves the card on a phone or prints it.

The person shows the card in an emergency, or to a doctor who does not know Pompe disease.

Visit Fundación Pompe Club Internacional

Frequently asked questions

Does a patient organization pay Rarus Health?

No. Rarus Health does not sell its service to patient organizations. Pharma and biotech companies, hospitals and clinics fund the deployments. A patient organization is a partner. It brings the trust of its community and its knowledge of the condition.

Does a company that funds a deployment see information about the members?

No. A company receives aggregated, anonymized findings. A company does not receive identifiable information about a patient. The company funds the deployment. Rarus Health operates it. The organization keeps its relationship with its members.

What does Rarus Health ask from a patient organization?

Rarus Health asks the leaders of the organization for three things. The leaders introduce Rarus Health to the community. The leaders review the guide and the messages before families see them. The leaders tell Rarus Health what does not work.

Can an organization from another country become a partner?

Yes. Rarus Health works with organizations in Chile and Colombia today. Health systems differ between countries, so Rarus Health prepares each partnership for the country's own institutions and rules. The first step is a conversation.