{"id":2893,"date":"2025-03-04T09:23:37","date_gmt":"2025-03-04T09:23:37","guid":{"rendered":"https:\/\/fondazioneefesto.org\/rare-diseases-and-science\/"},"modified":"2025-03-05T12:05:03","modified_gmt":"2025-03-05T12:05:03","slug":"rare-diseases-and-science","status":"publish","type":"post","link":"https:\/\/fondazioneefesto.org\/en\/rare-diseases-and-science\/","title":{"rendered":"Rare diseases and science"},"content":{"rendered":"\t\t
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RARE DISEASES and SCIENCE: from rarity to discovery, science as a guide<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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A conference with the flavor of a roundtable discussion.<\/p>\n

The importance of a meeting on the International Rare Disease Day <\/b>has guided our calendars and agendas toward a commitment that is more countercurrent than ever. While the world at large tends to exalt energies of closure and unprecedented selfishness, the Efesto Foundation becomes a spokesperson for Inclusion in research, analysis, and the amplification of synergies both inside and outside the territory that hosts us<\/b>. And it is precisely an important service association in the area, such as the Soroptimist Club Conegliano-Vittorio Veneto<\/b>, chaired by Chiara Da Re, that supports the organization of the scheduled meetings. <\/p>\n

AThe initiative is opened by the Councillor for Social Policies of the City of Conegliano, Gaia Maschio<\/b>, who focuses attention on the importance of the meeting, which creates a network by being educational and helping various medical sectors avoid isolating themselves in their clinics. The speakers of the evening are introduced by Manuela Nascimben<\/b>, General Director of Nostra Famiglia, a jewel of excellence with the IRCCS “Eugenio Medea” in Conegliano Veneto and Pieve di Soligo. Ada Vendrame<\/b>, Headmistress of the Istituto Comprensivo Conegliano 2 “G.B. Cima”, follows, highlighting the value of networking, and the President of the Efesto Foundation, Davide Giorgi<\/b>, who, with his forty years of experience in the management of sports and rehabilitation facilities, continues to weave together needs and resources in a wise approach of renewal and attention to the needs of the vulnerable and fragile people in our community. <\/p>\n

The evening is hosted by sports physician Federico Munarin<\/b> (Efesto scientific member), who gives a brief yet meaningful account of his ten-year journey at Fisiosport Terraglio with the 3S project (Sport, Social, and Health) up to the new National Rare Disease Plan (2023-2026), where information and training are the tracks on which the AFA (Adapted Physical Activity) project works, accepted within the framework of Article 33 of the National Law of September 20, 2023.<\/p>\n

A new world open to fragility and a conscious future where the essential level of care (LEA) guides physical activity from a temporary and urgent rehabilitative practice to a daily opportunity for discovering one’s body in order to overcome all kinds of disabilities.<\/p>\n

The intervention continues with the physiatrist and researcher Gabriella Papparella<\/b> (IRCCS E. Medea), who asserts, “disability is a life condition, not a disease.”<\/p>\n

She comments on the positive solutions for a future that reads the present through good examples: rehabilitation as a personalized problem-solving process where research and clinical practice go hand in hand, yielding tangible results.<\/p>\n

The bio-psycho-social model allows for teamwork on residual abilities, and a simple physiotherapy rehabilitation is accompanied by the collaboration of the occupational therapist, who reveals the objective improvements that have spontaneously emerged and developed during recovery activities.<\/p>\n

In this alternating series of situations, psychological support for patients and families accompanies the journey, facing reality in its full experimental nature day by day.<\/p>\n

In this all-around support, 365 days a year, Matteo Gobbo Trioli<\/b>, Secretary General of the Efesto Foundation, asks himself and all those present: “How much can we make easier?” The question remains open in our hearts and travels through our minds throughout the evening, as the Efesto Testimonials “Rare Families” bring examples to various specialists to share and explain, enriching our journey with their experiences. <\/p>\n

The communicative strength of the Telethon Foundation, with representative Annamaria Zaccheddu<\/b>, through powerful videos and precise content, demonstrates how “research can lead to cure” if we continue to believe that “people are not their conditions.<\/p>\n

The video of young Annalisa emphasizes “we are rare but never invisible,” and this is the overwhelming human message that Ornello Vettor, the active Telethon Foundation delegate from Treviso, has always taught us.<\/p>\n

The discussion turned complex and scientific when gene therapy was discussed, sparking the interest of the audience, where many are knowledgeable and have traveled long distances to be present. The Efesto Foundation consistently places molecular researcher Luisa Marcon on the front lines, always ready to diligently explain any misunderstandings to anyone who asks.<\/p>\n

They gracefully and harmoniously close the meeting of two artists, Efesto Rare Disease ambassadors:<\/p>\n

the actor on wheels, Lorenzo Pradel, recites two poems, connecting them by explaining their meaning and acting as both performer and interpreter between Bukowski and his friend Lucia Ferro, a poet in a wheelchair who, in one of her interviews, explained the value of writing with this phrase: “Writing is a way to share myself in the hope that others may see themselves and recognize something of their own experiences in my words<\/span><\/em>.”<\/p>\n

The national champion dancer Francesca Battista, concluding with the notes of “Volare,” demonstrates the lightness of her movements on two wheels and helps us feel better, lifting the weight of the doubt about how we can truly make things easier, because with her, we are reminded of the images from the first video, where Anna De Candia emerged from her cocoon and became a butterfly, and for twenty years, she has been helping the world become a better place.<\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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Carla Gagliardi, Scientific Director of Efesto<\/em><\/p>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t

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