I Cycle of Lectures on Rare Diseases:

An Experience Report

Abstract

INTRODUCTION: The National Policy for Care of People with Rare Diseases was created in 2014, aiming to establish comprehensive care for patients with rare diseases. However, the implementation of this policy is hampered by the great lack of information on the subject at a national level, which affects both doctors and students, as well as the families of these individuals. Therefore, the objective of this report is to describe the experiences provided by the creation of a cycle of lectures on rare diseases which targets to expand the knowledge of the general population on the subject. EXPERIENCE REPORT: The idea for the “1° Cycle of Lectures on Rare Diseases: an academic, social and human approach” was developed during a process of affiliation of two students to a local committee of IFMSA Brazil and, after the admission of the creators, eight coordinators were selected to implement the initiative. Registrations were made via Google Forms and dissemination via Instagram, WhatsApp, and the television program “Manhã Total”. The event was held on YouTube, on July 21 and 22, 2022, obtaining more than 1,400 views. DISCUSSION: The listeners were very satisfied with the lectures, especially with the opening of the speakers to clarify doubts, both from students and parents who have children with rare diseases. By comparing the responses collected between the registration form and the attendance forms, it was possible to verify an advance in knowledge about rare diseases after the lectures. CONCLUSION: The lecture cycle fulfilled its objective of expanding the population's knowledge about rare diseases, making it accessible, informative, and with room for clarifying doubts, even for people who deal with these diseases on a daily basis. Therefore, we can see the importance of promoting similar activities in order to popularize knowledge about this topic that is so relevant in society.

Keywords: Rare Diseases; Health Promotion; Public Health.