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Improving the lives of patients with Cystic Fibrosis

Name: Millorant la vida dels pacients amb Fibrosi Quística
Start: 2023-04-25T18:00:00+02:00
End: 2023-04-25T19:00:00+02:00
Location: Auditori

April 25 | 18:00 - 19:00

In recent years, much progress has been made in the knowledge and treatment of Cystic Fibrosis - a genetic and hereditary disease that affects the lungs, the digestive tract and other organs - but today it remains a pathology for which there is no cure.

For those affected and for the families, research and dissemination are essential to achieve progress in the knowledge and treatment of the disease.

With this conference, the Parc Taulí Institute of Research and Innovation invites all citizens to get to know closely what the daily life of the patient with CF is like, and will have the presentation of Paco García, president of the Catalan Cystic Fibrosis Association.

Likewise, Sarah Bajja, collaborator of Cystic Fibrosis research group of the I3PT, will offer a presentation on the latest news on the effect of CFTR modulators, which are changing the natural history of CF and demonstrate the importance of research to continue to advance the treatment of this disease.

Finally, the first will be delivered Pau Massana grant for research into minority diseases, which will be allocated to a pulmonary clinical research project of the I3PT. This scholarship has been financed thanks to the initiative of Cellers Maset and its Cava Solidari which will collect and contribute €25.000 each year for research into diseases of low or very low prevalence in society.

Addressed to:

Citizens, families of patients with CF, research staff

Program:

#18:00 p.m. Opening of the event, institutional welcome, Lluís Blanch, director of the Parc Taulí Research and Innovation Institute (I3PT) #18:05 p.m. Informative presentation: The day-to-day life of the patient with Cystic Fibrosis, Paco García, president of the Catalan Cystic Fibrosis Association #18:25 Scientific presentation: Impact of highly effective CFTR modulators in Cystic Fibrosis, Dra. Sara Bajja, collaborator of the Cystic Fibrosis research group, I3PT #18:35 Words from the Massana family, Josep Massana and Marc Massana #18:40 Presentation of the Pau Massana Scholarship for minority disease research, Josep Massana #18:45 pm Institutional closing, Dra. Anna Aran, director of the Parc Taulí Health Corporation #18:50 p.m. Toast courtesy of Cellers Maset

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Order date:: 25 d'abril
Time:: 18:00 - 19:00
Event category:: Conference
Event Tags:: I3PT agenda, agenda Taulí, Pau Massana scholarship, Cava Solidari, Cystic fibrosis, Rare Diseases, research

Organizing

: Parc Taulí Research and Innovation Institute; View Website Organizer

other

aimed at: Citizens, families of patients with CF, research staff
Program (write each point on a new line, unnumbered, and put # at the beginning of each point): #18:00 p.m. Opening of the event, institutional welcome, Lluís Blanch, director of the Parc Taulí Research and Innovation Institute (I3PT) #18:05 p.m. Informative presentation: The day-to-day life of the patient with Cystic Fibrosis, Paco García, president of the Catalan Cystic Fibrosis Association #18:25 Scientific presentation: Impact of highly effective CFTR modulators in Cystic Fibrosis, Dra. Sara Bajja, collaborator of the Cystic Fibrosis research group, I3PT #18:35 Words from the Massana family, Josep Massana and Marc Massana #18:40 Presentation of the Pau Massana Scholarship for minority disease research, Josep Massana #18:45 pm Institutional closing, Dra. Anna Aran, director of the Parc Taulí Health Corporation #18:50 p.m. Toast courtesy of Cellers Maset
Registration links: https://www.tauli.cat/actualitat/inscripcio-malalties-minoritaries-pulmo/