A few days before the XXVI National Congress, which took place in an entirely virtual format on November 5-7, the Italian Society for the Study of Hemostasis and Thrombosis (SISET) organized a webinar entitled “Congenital Plasminogen Deficiency and Ligneous Conjunctivitis.” The initiative, held on October 30 in collaboration with the Italian Association of Ophthalmologists (AIMO) and the Italian Federation of Rare Diseases (UNIAMO), and with the unconditional contribution of Kedrion Biopharma, was an important opportunity for specialists in the field to exchange ideas and interact.
Armando Tripodi, the President of SISET, introduced the works of the Congress, addressing a virtual audience of about 90 university professors and clinicians from the most important Italian hospitals, who discussed the need to improve the diagnosis of Ligneous Conjunctivitis and to promote the inclusion of this disease among the rare diseases being researched by scientific institutions.
The first speaker was the Hon. Fabiola Bologna, a member of the Social Affairs Commission of the Chamber of Deputies and presenter of the bill on rare and orphan diseases being debated in Parliament. She emphasized the role of patient and doctor associations as well as that of researchers, companies included.
In her presentation Dr. Maria Teresa Sartori of the University Hospital of Padua said: “The attention being given to this ultra-rare disease is still very low; a multidisciplinary commitment is needed to promote its diagnosis and to prevent and treat eye injuries which, in a third of patients, can lead to irreversible damage. This is essential considering the fact that a specific replacement therapy which has proven to be safe and effective in preventing relapses of the disease exists and is available.”
From a scientific point of view the webinar provided a complete overview of the mechanism of fibrinolysis, the role of plasminogen in the pathogenesis of ligneous conjunctivitis and the clinical and therapeutic aspects of the disease. In addition, it emphasized the importance of collaboration not only between the different specialists but also with patient associations and institutions.