Event at the National Academy of Medicine: Meeting with ITEC (Parliamentary Front on Rare Diseases)

Márcio Galvão (@ataxia_info) and Renata Nunes (@renata_ataxia), as volunteers of ABAHE (Brazilian Association of Hereditary and Acquired Ataxias) (@ataxias_no_brasil), had the honor of participating in the event 'Meeting of the National Academy of Medicine with the Parliamentary Front on Innovation and Health Technologies for Rare Diseases – ITEC Raras' on August 21, 2025.

The event held at the National Academy of Medicine (ANM) in Rio de Janeiro was coordinated by Prof. Dr. Osvaldo Nascimento and Prof. Dr. Marcelo Morales.@osvaldojmnascimento@moralesmm

There were 3 panels with many important presentations:

Panel 1

👉 Parliamentary actions and legislative perspectives for rare diseases (Congresswoman Rosângela Moro and Senator Astronaut Marcos Pontes by video).

@rosangelawmoro

@astropontes

Panel 2

👉 The patient’s odyssey (Daniele Americano - NMO Brasil).

👉 Access to diagnosis and treatment (Dr. Maria Cecília Oliveira - FEBRARARAS).

👉 Reference centers for rare diseases in Brazil (Prof. Dr. Karina Lebeis - UNIRIO).

@meninacoragem

@febrararas

@drakarinalebeis

Panel 3

👉 Gene therapies and rare diseases (Dr. Edmar Zanotelli - USP-SP).

👉 Advanced diagnostics for rare diseases (Dr. Pedro Tomaselli - USP-SP).

👉 New therapies for the treatment of rare diseases (Dr. Osvaldo Nascimento).