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HEALTH: a free legal desk for rare diseases

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On the occasion of “Rare DiseaseDay 2018,” the Rare Disease Observatory unveiled a new service dedicated to patients: the Legal Desk, free of charge, christened “On the Rare’s Side.” The initiative was created to help people navigate the tangles of the legal, tax and bureaucratic world, within which it is often easy to get lost. The service, which is completely free of charge, has been active since Feb. 28: to access it simply go to the link https://www.osservatoriomalattierare.it/sportello-legale-omar-dalla-parte-dei-rari. The legal advice column is edited by Roberta Venturi, a lawyer and researcher at OSSFOR (Orphan Drug Observatory), and Ilaria Vacca, editor-in-chief of Omar.

What is Omar

The Rare Disease Observatory is a news outlet dedicated to rare diseases and rare cancers, receiving dozens of requests for help each week on issues of exemptions, civil disability recognition, and access to medications and treatments. “Although we deal purely with communication,” explains Ilaria Vacca, editor-in-chief of the paper, “we are honored to have become a real point of reference for people with rare diseases and their families. In fact, it is not always easy to provide timely and decisive answers, which is why we decided to activate a column dedicated to legal advice. We firmly believe in ‘service journalism’ and even more so in the synergy between journalism and the Law.”

“Coming up against complex regulations, legislative loopholes or excessive bureaucracy,” explains Roberta Venturi, a lawyer specializing in Healthcare and Pharmaceutical Administration and in Personal Data Protection in Healthcare and for Scientific Purposes and a researcher with the Orphan Drug Observatory, “can put patients and families in serious difficulty. Our goal, therefore, is to properly inform and orient our users to the correct legal approach to take.”

The new service

“O.Ma.R. has always stood by patients,” concludes Ilaria Ciancaleoni, director of the Observatory; “with this service, we can offer additional practical help to the many people who find themselves in difficulty. We also want to strengthen our communication channel with the Ministry of Health, with Aifa, with INPS, and with the regions and ASLs, key players in the protection of people with rare diseases.”

The Legal Desk service, which is completely free of charge, will collect all requests that come to the service, using a special contact form, and will also offer initial legal guidance response to all users. Some cases will be followed closely and told within the column. Answers to numerous FAQs on the topics of exemptions, civil disability recognition, Law 104 and tax benefits are already active on the home page of the service. All thanks to Omar!

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