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Elmira Safarova, PhD

Rocket patients-driven drug development

Elmira Safarova, PhD, is the Founder and CEO of Rarus Health SPA, a company focused on addressing challenges in the pharmaceutical and biotech sectors, particularly in the context of rare genetic diseases. With a strong background in the pharmaceutical industry and biotech startups, she has demonstrated leadership in both local and international markets.

Originally from Moscow, Russia, Safarova relocated to Santiago, Chile, two years ago to pursue her entrepreneurial ambitions. Her work at Rarus Health involves creating innovative solutions to enhance patient-focused drug development and bridging gaps in healthcare services.235

In addition to her role at Rarus Health, Safarova has experience from previous positions, including at MedMediator, which further enriches her expertise in the field.5 She is recognized for her commitment to solving complex problems and fostering connections within the healthcare industry.14

Highlights

Sep 5 · linkedin

Today we participated in the first Regional Event on rare diseases at Hospital Regional Rancagua . It was a truly interesting discussion between patient communities, Ministry of Health, and health professionals.

Alejandro Andrade Araya presented the results of research conducted by FECHER Directorio Federación Chilena de Enfermedades Raras, highlighting problems and the economic and emotional burden on #caregivers in Chile. The key takeaway: without data, we cannot plan resources—both personal and state-level. Unfortunately, there are currently no statistics on rare diseases (EPOF) in Chile. Ministerio de Salud Chile presented the latest update on the strategy to improve the situation. Well, complex problems require a complex approach and long-term consistency. I would say consistency is really where improvement is most needed.

Nicolás Schöngut, leader of the #Duchenne Chile community, also addressed these issues. In reality, caregivers are the decision-makers, and it is extremely difficult to navigate uncertainty at every turn.

I was also very impressed with the multidisciplinary #SpinaBifida team lead by Jose Miguel Müller Riquelme at #Rancagua Hospital. They truly work as a team, providing a 360-degree view of family care. I will definitely return to learn more and start collaborating!

#digitalhealth #rarediseases #enfermedadesraras

Aug 29 · linkedin

Over the last 2 months, our Rarus Health SPA team has been very busy creating and delivering a unique educational course for pediatric nurses. We developed this course in collaboration with our partner, RED ENSI, Red Internacional de Enfermeria en Salud Infantil, to raise awareness about rare genetic diseases and provide practical tips for daily practice.

Here are some insights from our course:

Diverse Regional Participation Our program attracted participants from across 10 countries (!). Notably, 13% of participants were from Spain, indicating the course's relevance extends beyond Latin America.

Experienced Professionals Seeking Specialized Knowledge Perhaps our most striking insight was the wealth of experience among our participants. The average nursing experience was nearly 14 years, with 25% of attendees boasting 18 to 24 years or more in the field. This high level of engagement from seasoned professionals highlights both the complexity of rare diseases and the ongoing need for specialized education, even among highly experienced nurses.

Unprecedented Engagement and Retention The course's success is evident in its exceptional attendance rates. We maintained an impressive 83% attendance rate through the course, culminating in 87% attendance for the final session (simulated clinical case). These figures underscore the critical need for specialized rare disease education in the nursing community.

Moreover, following incredible retention throughout the sessions, participants showed a high level of involvement. Open discussions and interactive elements, such as the "open mic" sessions, fostered a collaborative learning environment. WOW!!! The knowledge of our nurses upon the post course test results skyrocketed by an astounding 250%! This remarkable achievement highlights the power of our expertly crafted educational materials and our commitment to excellence. The Course was recorded and will be available in Rarus Health App, in the Academy part.

We believe that education is a substantial part of creation and growth of the professional community in the area of #rarediseases. By empowering #nurses with the knowledge and tools they need, we are contributing to better patient outcomes and advancing the field of rare disease management.

We are proud to have partnered with RED ENSI and Jocelyn Ramon Rojas and look forward to continuing our work in this critical area of healthcare.

#digitalhealth #nurses #rarediseases

Related Questions

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Elmira Safarova, PhD
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Location

Chile