Scientists' Parade - Rare Disease Day

Date & Time

February 27, 10:30-12:00h

Location

Downtown Coimbra (meeting point: Largo da Portagem)

Registration

Not Mandatory

40 scientists walk through downtown Coimbra to mark Rare Disease Day

 


On the morning of February 27, downtown Coimbra will welcome a “parade of scientists". The initiative is organized by GeneT — Center of Excellence in Gene Therapy and the Center for Neuroscience and Cell Biology at the University of Coimbra (CNC-UC) and marks Rare Disease Day, celebrated on the last day of February.

 

On a route that begins at Largo da Portagem and ends at Praça 8 de Maio, about 40 scientists will walk through downtown Coimbra between 10:30 am and 12 pm. The aim of the march is to raise awareness among citizens about the challenges posed by rare diseases, especially neurological ones, to answer questions from the public, and to share some of the research carried out at GeneT.

 

More than 300 million people worldwide live with a rare disease (affecting less than one in every 2,000 people). According to the Rare Disease Day organization, 70% of rare diseases begin in childhood and 72% are genetic. There are more than 7000 rare genetic diseases without therapy, affecting 6% of the world's population.

 

Created in 2024, GeneT is a research and innovation center dedicated to rare genetic diseases. It began as a CNC-UC research group dedicated to gene therapy for spinocerebellar ataxia type 3, also known as Machado-Joseph disease. Spinocerebellar ataxias are a heterogeneous group of highly debilitating neurodegenerative genetic diseases.

 

GeneT is the only center of excellence for gene therapy research in Portugal and is currently creating six new research groups dedicated to other rare ophthalmological, infectious, musculoskeletal, cardiovascular, and other diseases, diversifying its areas of activity. The center focuses on the relationship between research, therapy development, and clinical application and will be equipped to conduct clinical trials and produce medicines.

 

Gene therapy represents a cutting-edge therapeutic approach, particularly effective in curing rare diseases, with a huge impact on the lives of patients. It is a rapidly developing biomedical field in terms of the production of new scientific knowledge with clinical applications and a significant economic impact.

 

GeneT is a project ecosystem funded to the tune of €38 million by national entities such as the European Commission, the Portuguese Government, the Coimbra Local Health Unit, the Foundation for Science and Technology, and other entities in the health sector. It is part of a network of more than 100 partners around the world, including academia, industry, hospitals, and other services, as well as patient associations.

 

The event is supported by APBC – Agency for the Promotion of Downtown Coimbra.

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