"Rare diseases often threaten lives. Through preventive efforts and support of consistent treatment, it is hoped that the exposure to rare diseases in the community can be reduced," she noted in a written statement received here on Wednesday.
Moerdijat made the statement through written remarks in an online discussion titled "Rare Diseases and Integrated Technology" held by the Denpasar 12 Discussion Forum on Wednesday.
According to the MPR deputy speaker, optimizing prevention and treatment of rare diseases should be supported through collaboration among several parties and application of the right strategy.
These approaches are believed to support Indonesia's capability in handling rare diseases and developing effective treatments to improve the quality of life of patients, she remarked.
Moerdijat outlined several challenges in the handling of rare diseases in Indonesia, such as the lack of early detection, the high costs incurred in treatment, the length of time taken for diagnosis, and the treatment of diseases that involve interdisciplinary experts.
The MPR deputy speaker emphasized that stakeholders should ensure rare disease management handling in Indonesia is conducted in tune with the needs of the community.
To this end, she underscored the importance of providing protection and support in the form of social security for rare disease patients.
"Collaboration among the government, private health service providers, researchers, and patients advocacy groups should be strengthened for handling rare diseases in the country," she remarked.
The online discussion featured several speakers, comprising Director for Non-Communicable Disease Prevention and Control at the Health Ministry, Eva Susanti, and Head of the Center for Rare Diseases at the Cipto Mangunkusumo Central Public Hospital (RSUPN) Damayanti Rusli Sjarif.
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Translator: Gilang Galiartha, Raka Adji
Editor: Yuni Arisandy Sinaga
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