Perlindungan Hukum Terhadap Pasien Yang Mengalami Sindrom Stoneman di Indonesia. (Legal Protection for Patients with Stoneman Syndrome in Indonesia).

Pratiwi, Emalia (2024) Perlindungan Hukum Terhadap Pasien Yang Mengalami Sindrom Stoneman di Indonesia. (Legal Protection for Patients with Stoneman Syndrome in Indonesia). Undergraduate thesis, universitas 17 agustus 1945 surabaya.

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Abstract

In practice, health services recognize various kinds of health problems in the community, one of which is related to rare diseases. In this study, the health problem that will be discussed is Stone Man Syndrome or Fibrodysplasia Ossificans Progressiva (FOP), known as stone man syndrome, is a connective tissue disorder and a very rare and disabling genetic disorder, characterized by congenital abnormalities due to mutations that occur in genes. ACVR1, a gene that controls cell growth and proliferation in muscle and connective tissue. Most of this disease occurs in children, especially boys, who must receive legal protection for patients who experience Stoneman Syndrome according to the Health Law and sanctions given to people who discriminate against patients who experience Stoneman Syndrome. The research used in this research is normative legal research so that legal protection can be produced regarding the rare disease Stoneman Syndrome using Law Number 17 of 2023 and penalties given to people who discriminate against Stoneman Syndrome patients using civil law settlements, legal settlements. criminal penalties, as well as settlements for consumers of health services in accordance with the laws and regulations in force in Indonesia. The importance of protection and law enforcement is none other than ensuring legal protection and what can most directly protect the interests of victims is the payment of compensation and imprisonment in accordance with the established law.

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