Rare Disease Day

Rare Disease Day aims to raise awareness about rare diseases and their impact on patients’ lives. This initiative takes place every year on the last day of February and is organized by Rare Diseases Europe (EURORDIS) – an alliance of 917 rare disease patient associations.


Less Rare: demystifying rare diseases is the event organized by CNC-UC to mark World Rare Disease Day, on February 29, 2024. The session, held at the UC Exploratório - Centro Ciência Viva da Universidade de Coimbra, between 6.30pm and 8pm, includes a round table bringing together researchers and professionals from different areas, and ends with the performance 'The brain on the road to perfection', by the Rita Grade Dance School. This event makes part of the project Less Rare, led by the CNC-UC researcher Catarina Miranda. 


Admission is free and the event is in Portuguese.


18h30-19h30 - Round table


Catarina Ribeiro, UC

Luís Pereira de Almeida, CNC-UC, geneT, CIBB, FFUC
Joaquim Brites, Portuguese Neuromuscular Association
José Vilhena, DOCE Association
Célia Salema Costa, Portuguese Association of Hereditary Ataxias (APAHE)

19h30-20h00 - Dance performance
Embracing Rare Diseases, by the Rita Grade Dance School


Program for 2024




"Together we are more. Huge thanks to all the researchers. This exchange of knowledge is a blessing. The scientific language allied to us in boundless simplicity. Thank you for sharing your knowledge and for the kind way in which you have opened "doors" for us. Those of your knowledge, those of your laboratory. We went through them in fear, showing all our weaknesses. We know - you should all know - that ataxia researchers are increasingly applying themselves to research. You should also know that scientific language is difficult to understand. But these people have the humility and sensitivity to show that what is difficult becomes easier because they accompany us in the same struggle. Stop the harmful effects of Ataxias by all means. Welcome every day, and today Rare Disease Day. There are no words for such generosity. The words of the heart speak louder. Together we are more!"

Maria José Santos, presidente da APAHE (2019)

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