World Rare Disease Day, in Ragusa the inauguration of a mural and a conference

On the occasion of the World Rare Disease Day, Saturday, March 28, Ragusa will host the conference “Weaving Hope for the Future”, promoted by the working group on rare diseases of the National Federation Tsrm and Pstrp, in collaboration with Uniamo – Italian Federation for Rare Diseases.

The initiative has received the patronage of the Municipality of Ragusa, the Free Municipal Consortium, the Asp, the associations Animass and Asmara onlus, and the Order Tsrm and Pstrp of Ragusa.

The program includes the presence of national representatives from the institutional, health, and associative sectors: the president of Uniamo, the president of Fno Tsrm and Pstrp, the presidents of Asmara and Animass, alongside health professionals and active representatives in raising awareness, diagnosis, and care for people with rare diseases.

The day will begin at 3 PM in Piazza Mons. Tidona, in front of the Cathedral of San Giovanni, with the inauguration of a mural dedicated to the occasion and the blue bench, a symbol of awareness about Sjögren's syndrome: a tangible act that leaves the city a permanent mark of attention and closeness to patients and their families.

At 4 PM, at the Church of the Badia, the public session of the conference will follow, open to citizens, associations, and healthcare operators. The program will alternate institutional speeches, scientific contributions, clinical analyses, and cultural moments, aiming to make the complexity of rare diseases and the value of a multidisciplinary approach accessible.

“People with rare diseases often have misunderstood needs, from diagnosis to research, but especially in care, therapy, and assistance. Shedding light on their needs and leaving visible marks, like the mural we are inaugurating on Saturday, is essential. We thank Fno Tsrm and Pstrp and in particular Roberto Caruso Olivo for this beautiful initiative and hope that the network around our people can become ever denser, ensuring that no one ever feels alone,” says the president of Uniamo, Annalisa Scopinaro.

“This day is intended to strengthen collective awareness on the topic of rare diseases and to promote a constant dialogue between institutions, healthcare professionals, associations, and the community. Only a solid and multidisciplinary network can provide concrete answers to people with rare diseases and their families. I would like to thank the municipal administration of Ragusa for their support and the company Pisacane for the generous donation of the mural and for the realization of the painting of the blue bench, a valuable contribution that adds value and visibility to our commitment. I also thank the working group on Rare Diseases that contributed to the success of this event, a group composed of representatives from the national boards of healthcare professions affiliated with the federation,” highlights Roberto Caruso Olivo, member of the central committee delegated to Rare Diseases and president of the Tsrm and Pstrp Order of Ragusa.

The day will be enriched by a theatrical performance dedicated to the role of healthcare professions in the care and rehabilitation of people with rare conditions and will conclude with the testimony of a local family. Citizens, associations, and health professionals are invited to participate.