Official Opening of Indonesia Center of Excellence for Rare Diseases

Rare diseases are often forgotten and considered less important because there are small numbers of patients and also these disease often need many resources to treat. After years of hard work, the doctors and family of patients with rare diseases can finally call Cipto Mangunkusumo Hospital as the home for rare disease warriors. Indonesia Minister of Health, Prof Dr. dr. Nila Moeloek, SpM(K) officially announced the opening of Indonesia Center of Excellence for Rare Diseases in Cipto Mangunkusumo Hospital on November 4 th , 2017 in conjunction with the celebration of Indonesia’s National Health Day and 98 th birthday of Cipto Mangunkusumo Hospital. This service has begun its foundation since 20 years ago but has yet to receive recognition until now.

This service combines three pillars for better management of rare diseases, which are multidisciplinary team, diagnostic laboratory in collaboration with Human Genetic Research Center Indonesia Medical Education and Research Institute Universitas Indonesia (IMERI UI), and patient organization as a form of family support. Yayasan MPS dan Penyakit Langka Indonesia participated on the event by sharing information about some rare disease that are treatable. Some of our members also came to the event and met with the Minister of Health to voice their struggle to find the right diagnosis and treatment for their children. Miss Peni Utami, as our chairwoman, also met with the Minister of Health and share our “Care for Rare” souvenirs and ask for support for patients with rare diseases. A disease may be rare, but a hope should not be.

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