Rare disease is a life-threatening disease or disrupts the quality of life with a low prevalence (less than 2000 patients in the population). Rare diseases are often considered unimportant, especially in developing countries, because of the small number of patients. Padaham is actually a rare disease quite a lot collectively. More than 7000 rare diseases have been identified and affect the lives of millions of people in Asia.
Eighty percent of rare diseases are caused by genetic disorders. Rare diseases are usually chronic or chronic, progressive, and life-threatening. Approximately 75 percent of the total number of people with rare diseases are children and 30 percent of whom are children under 5 years old. In general, there are 6,000-8,000 types of rare diseases in the world. If all people with rare diseases combined, then the number could reach 350 million people.
Some rare diseases are also called inborn error of metabolism. This disease is caused because the patient suffers from a deficiency of the enzyme which can cause the accumulation of substances or otherwise lack of certain substances. The state of the deficiency or excess of the substance is what causes the symptoms in the patient. Some examples of symptoms experienced by patients are developmental decline, stomach enlargement caused by accumulation of substances in the liver and spleen, seizures, weight loss, decreased consciousness, and others.
Examples of rare diseases that exist in Indonesia include mukopolisakaridosis (MPS) type II or Hunter syndrome with the incidence rate in the world 1: 162.000. Maple Syrup Urine Diseases (MSUD) with world events of 1: 180000 live births, glucose-galactose malbasorption syndrome whose number of patients is only around 100 people worldwide, and others.
Care for rare disease is a caring movement against rare diseases in Indonesia that aims to raise funds to help patients to know the diagnosis of disease and undergo treatment process. This movement was initiated by Yayasan MPS and Rare Diseases Indonesia in collaboration with RSCM doctors (an integrated service team of Indonesian rare disease), scientists from the University of Indonesia and support from a rare family illness foundation.
The MPS Foundation and Rare Diseases Indonesia is a non-profit organization that was inaugurated in March 2016. The foundation was formed after the launch of "Indonesia Rare Disease Day" for the first time on 29 February 2016. The Foundation was established as a first step to reach out to patients, and various parties from within and outside the country for better governance in Indonesia
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