Rarus Health: the startup aiming to transform the way to confront, treat and accompany rare diseases
The Chilean startup just launched an international campaign to gather data on neuromuscular diseases and raise awareness for families facing these situations. In a conversation with Entreprenerd, they provided more details about this initiative.
It is estimated that rare diseases affect 5% of the global population. Of that "universe", approximately 70% of these conditions have a genetic origin or component. This is significant since, due to their "rare" condition - which means that they manifest very infrequently in different countries around the world - they often have complex, expensive, or even non-existent treatments.
In that context, a Chilean startup named Rarus Health emerges, which is focused on supporting and backing patients -and their caregivers- who are facing the tough challenge of so-called "rare diseases".
With a strong emphasis on neuromuscular pathologies, the enterprise created by has launched a national and international campaign in Health tech to gather information that allows to raise awareness of the problems and needs of thousands of families in Latin America and other continents.
Follow us on: 
The initiative, created by Elmira Safarova, a Russian researcher who traveled to Chile to launch the initiative under the Startup Chile program, is now backed by the National Agency for Research and Development (ANID), to obtain real-world data (Real World Data) on the challenges that those living with neuromuscular diseases face.
The project, christened "Reales", aims to chart a comprehensive map that facilitates the creation of public policies, the development of more accessible treatments, and ultimately, the improvement in the quality of life for those who suffer from these conditions. On this campaign - in addition to the startup's scaling projections, Entreprenerd spoke exclusively with Cristian Segura, the product manager of the Chilean healthtech.
Follow us on: 
A Platform to Democratize Care
The first pillar of the campaign is the digital platform of Rarus Health, available for free for all individuals seeking advice and companionship in rare diseases. Through it, both patients and caregivers can create a profile, enter any medical documentation they have, record symptoms, and access a "personal care advisor" (or care manager), a figure the company describes as a true "co-pilot" in navigating the healthcare system.
In this regard, the service provides fundamental guidelines for the so-called "diagnostic odyssey", a concept that refers to the complex route of tests, referrals, and procedures that families go through. "Most doctors do not have specific training to recognize symptoms of rare diseases, and parents often find themselves having to repeat the same medical history dozens of times. The platform, along with our care advisor, seeks to simplify this process and deliver a concrete action plan", details Segura.
This action plan, in many cases, includes suggestions for genetic testing, specialist contacts, national and international reference centers, as well as recommendations for psychological and therapeutic support. "70% of rare diseases have a genetic component, but often this takes years to diagnose; our goal is to shorten these time frames, leverage global experience and take a step towards collaboration between doctors and caregivers", the executive emphasizes.
Investigation "Reals": Open Data for a Global Problem
March 18th marks the formal start of the investigation Rarus Health has named "Reales", in which they will primarily investigate degenerative neuromuscular diseases. For three months, the company will accept registrations from adult patients and caregivers of children with diagnoses or suspicions of these types of pathologies, with the purpose of gathering standardized and robust information.
"Part of the relevance of 'Reales' lies in that it will generate clinical, social, and economic evidence, which are so far scarce in the region. Many of these diseases do not have a defined treatment or the existing drugs are unattainable for most of the affected. Without data, the pharmaceutical industry and the government have difficulties in focusing resources on research and public policies," emphasizes Segura.
The study, which also includes the execution of various educational and updating webinars for health professionals, is backed by experts in Colombia, Peru, Argentina, and Mexico, as well as doctors and academics from Europe and the United States. "We want to cover as much case diversity as possible, so we invite people from all over the world to record their experience, always protecting their identity and complying with personal data regulations," underlines the Product Manager of Rarus Health.
A Bet on Collaboration and Empathy
Since its founding, Rarus Health has operated with a philosophy of co-design, involving patients, caregivers, and medical professionals in product decisions. It's not just about developing a technological platform, but ensuring the information and connections with specialists truly make a difference in the lives of families.
"In many cases, the caregiver did not choose to be one; they assumed that role because the family needed it. And the less known the disease is, the harder it is to find support or even simple advice from someone who has already been through the same situation," mentions Segura. For this reason, the Chilean startup aims to become, in the medium-term, a true technological hub where medical centers, professionals, laboratories, and public and private institutions converge.
The importance of mental care is another focus: "Between 80 to 90% of those living with a neuromuscular patient suffer from stress, anxiety or depression. Therefore, in addition to direct care, we guide care givers and patients themselves towards therapies and support networks. We want this campaign to serve to make visible this human side, often postponed, of rare diseases," emphasizes the executive.
Projections and Next Steps
In addition to the "Reales" campaign, the company plans to scale its impact in the region, focusing on Colombia, Mexico, and Brazil, countries with large data gaps in rare diseases and with the potential to implement solutions that gather information and offer comprehensive care. Along with this, the firm seeks alliances with laboratories and pharmaceutical companies that require reliable data for the development of possible therapies.
Segura confirms that the goal is to democratize access to information and care for rare diseases: "Rarus Health's desire is for a child or adult with a neuromuscular condition not to walk a lonely and frustrating path. By centralizing data and referrals, we will be able to overcome barriers and expedite this process, not only in Chile but anywhere in the world."
How to Participate
Those interested in learning about and joining this campaign can visit rarus.health/reales for details, to register or to contact the team. There is no cost whatsoever for using the platform, as the project is funded by contributions from ANID and the business model of Rarus Health focuses on partnering with pharmaceutical and biotech companies. Furthermore, the information collected will be handled anonymously and following strict international data protection protocols.
"We want to be the first in Latin America to create an expansive and reliable mapping of these neuromuscular diseases. We aim to make this resource useful to both the scientific community and the public in general. But throughout all of this, we never lose sight of our ultimate goal: to provide real and empathetic support to those facing a complex and often poorly understood medical landscape," concludes Cristian Segura.