Rare Disease Day 2020: Fair for Rare

Rare Disease Day is celebrated every year on February 29 th , a special day to celebrate rareness. This year, the commemoration was held on Sunday, March 1 st , 2020 at the Car Free Day Area, Jakarta. Yayasan MPS dan Penyakit Langka Indonesia, National Center of Rare Disease Cipto Mangunkusumo Hospital, and Asian Medical Students’ Association- Indonesia (AMSA-Indonesia) collaborated to organize the event. “Fair for Rare” was this year’s theme, aimed to encourage policy makers to make efforts in providing facilities to diagnose and treat rare diseases in Indonesia.

Children with rare diseases and their families walked together with friends from ITB 80 RUN and Ma’em Run Club to mark the beginning of the commemoration at 7 am. Along the way, words of aspirations such as “we are rare”, “we are special”, and “fair for rare” were shouted by the participants and drew attention of people. More people joined the event as Zumba on Stage was held at the fun walk’s finish line. The event continued with a talk show entitled " Fair for Rare: Equality and Fairness for Rare Disease’” with the following panelist : dr. Lies Dina Liastuti, SpJP (K), MARS, FIHA as the Director of RSUPN Dr. Cipto Mangunkusumo; Prof. Dr. dr. Damayanti R. Sjarif, SpA (K) as the Head of the National Rare Disease Center Cipto Mangunkusumo Hospital;

Ms. Peni Utami as Chairperson of Yayasan MPS dan Penyakit Langka Indonesia; and Ms. Joanna Alexandra as an influencer who is also a mother to a child with rare disease. The talk show provided information about rare diseases including the definition of rare disease, the situation of rare disease in Indonesia, its problems and actions that have been taken to solve them, and how civilians can contribute in managing rare diseases.

Families of rare disease patients also shared their experiences in facing the disease. Many participants took the opportunity to ask questions directly to the interviewees. The crowds were entertained by Iwa K & Sweet Martabak’s live performances at the end of the event, giving support through the words of music. Hopefully this event will increase public awareness of problems faced by children with rare diseases and be encouraged to support the cause.

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