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More Than 350 Million People Living with Rare Diseases

Turkchem 07 Jan 2021 55 1 dk okuma
TURKCHEM
28 February is World Rare Disease Day. Approximately 7,000 different rare diseases exist globally, and more than 350 million people struggle with rare diseases. Diseases occurring in 1 in 2,000 people are considered rare. While 80% stem from genetic causes, 50% of patients are children. Unfortunately, one-third of children affected by rare diseases do not live to celebrate their fifth birthday. In Turkey, due to the scarcity of research conducted and the failure to diagnose certain conditions, there is no precise data, though the number of people affected by these diseases is estimated at 6 million. In rare diseases, operating with the awareness that creating awareness among patients, patient relatives, physicians and nurses is lifesaving in itself, Sanofi Genzyme's primary mission is to ensure that people fighting rare diseases for which it offers treatment solutions receive early diagnosis and access to proper treatment. Sanofi Genzyme developed www.farkyarataneller.com as a solution to one of the major gaps faced by patients and patient relatives regarding rare diseases—Turkish-language "reliable information source". The platform aims to raise awareness among all segments of society about diseases so rare that they occur in 1 in 2,000 people or even fewer.   Beyond creating a reliable information source, the platform focuses on experience sharing through real and inspirational stories, featuring current articles on rare diseases, scientific studies, infographic data, patient stories and descriptions of all diseases.
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