Advanced therapies, genomic screening, sustainability of treatments. These are just some of the many topics that will be addressed from Sunday 12 March in Riva del Garda (TN) at the XXI Scientific Convention of the Telethon Foundation, thanks also to the support of the Autonomous Province of Trento. Three events planned, which will involve all the main players in the world of research on rare genetic diseases: the V Clinical Conference on Neuromuscular Research (12-13 March), the XXI Scientific Convention (13-15 March) and the VII Conference of Associations on the Telethon Foundation Network (March 12-14).
This year there will be about 850 participants, who will have the opportunity to learn about the latest research achievements of the Telethon Foundation but also to discuss, share ideas and projects, and establish new collaborations: over 500 researchers and clinicians, 200 representatives of associations of patients, over 30 external guests, including international ones, 36 provincial coordinators of the Foundation, 40 exhibitors and sponsors.
Many topics covered, including the most important goals achieved in the therapeutic and diagnostic fields and in the study of the mechanisms of various rare genetic diseases, such as neuromuscular, neurodevelopmental and mitochondrial diseases. There will also be insights into cutting-edge topics such as advanced therapies and artificial intelligence, as well as the impact that the National Recovery and Resilience Plan (PNRR) will have in the field of research on rare diseases. The topics dedicated to patient associations are also significant: genomic screening for early diagnosis, sustainability and access to gene therapy, virtuous models of research funding by the patient community.
“The Convention is a central moment for what we call the Telethon ecosystem – declares Francesca Pasinelli, Director General of the Telethon Foundation – It is an opportunity for researchers to update and discuss the progress of projects and for dialogue with the community of patients represented by the associations that are part of our network.
We therefore thank the Province of Trento which over many years has built a valuable partnership with the Telethon Foundation by contributing to the organization of this event and thus giving important support to research on rare genetic diseases”.
In this edition, the commitment made has become even stronger, especially with regard to accessibility and inclusion. In fact, it will be possible to follow the Conference of Associations online also in streaming on VIMEO, and a stenotypist will be present to provide support to deaf people. The Conference will also be broadcast live on the RadioAidel22 web radio, the first Italian radio laboratory within a patient association dedicated to a rare disease, chromosome 22 deletion syndrome. Lastly, there will be moments of exceptional entertainment, capable to stimulate reflection under the sign of a smile, such as the shows “We are made Di-verse, because we are poetry”, by Guido Marangoni and Nicola De Agostini, and “Life is magic”, by Christopher Castellini – the illusionist of the mind.
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