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Workshop – Unseen Patients. Ethics for rare diseases

June 19, 2024 (9.15 a.m. – 6.00 p.m.)

The Interdepartmental Center for Research Ethics and Integrity (CID Ethics) of CNR is organizing the workshop “Unseen Patients. Ethics for Rare Diseases.”

Extreme vulnerability, loneliness and lack of appropriate care and assistance unite the condition of the rare and often forgotten sick, making their presence opaque and invisible. Their extraordinarily difficult condition calls everyone to awareness and institutions to the responsibility of putting in place equally extraordinary political and economic measures to adequately respond to their needs and requirements. Ensuring adequate care and protecting the rights of the sick regardless of the nature of the pathology and the economic and social contexts in which they live is in fact an elementary matter of justice, so that the condition of illness is not itself a cause of discrimination, impoverishment and social exclusion.

The workshop offers a reconstruction of the overall picture of rare diseases with a focus on those aspects that most affect patients’ life expectancy and quality of life. Advances in scientific research (diagnosis, drug development, therapies, and rehabilitation), health policies, and scientific communication are explained. The event includes a slot dedicated to patient associations in order to collect proposals, data regarding unexpressed health needs, indications of information needs, and experiences regarding their activities. The goal is to create a positive synergy between the world of research and that of patient associations in order to realize operational tools close to the real needs of people with a rare disease.

The event is one of the initiatives activated under the project “Center for the Research of New Drugs for Neglected and Poverty Rare Diseases,” which is the subject of an agreement between the CNR (Consiglio Nazionale delle Ricerch) and the CNCCS Consortium (National Collection of Chemical Compounds and Screening Center). The research activities entrusted to the CNR’s Interdepartmental Center for Research Ethics and Integrity (CID Ethics) (Work-Package 6 – bioethics) are directed toward the ethical analysis of the objectives and methodologies of health, care and rehabilitation interventions, as well as the indication of tools for improving the quality of life of patients and care-givers.

To participate register here

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Editorial board

The Editorial Board is composed of Giorgia Adamo (Responsible), Tiziana Ciciotti, Paola Grisanti, Emiliano Liberatori and Elena Mancini