Funwalk Indonesia Rare Disease Day 2019

Funwalk on Sunday, February 24th, 2019, at the Car Free Day Jl. Sudirman, Central Jakarta, was held as an opening of the series events to celebrate World Rare Disease Day 2019. Through this event, Yayasan MPS dan Penyakit Langka Indonesia collaborated with Pusat Pelayanan Penyakit Langka RSUPN Cipto Mangunkusumo, wanted to raise public awareness of rare diseases. This is the fourth event in Indonesia after it was previously held at Indonesian Medical Education and Research Institute (IMERI) FKUI in 2018, at Lobby Kiara RSUPN Cipto Mangunkusumo in 2017, and at the Double Tree Hotel by Hilton in 2016.

 

Carrying the theme of 'Bridging Health and Social Care', this funwalk was successfully attended by hundreds of participants. Some of rare disease patients also attended the event. Registration was opened at 06.00 a.m. The enthusiasm of the people is truly awesome. Participants, such as patients, patient families, and all people had been registered, were guided to write down their hopes, desires, and prayers for children with rare diseases on a piece of paper. These paper were linked into the balloon that will be released together. The releasing of the balloon was led by the Direktur Utama RSUPN Cipto Mangunkusumo, dr. Lies Dina Liastuti SpJP (K) MARS; and Direktur Medik dan Keperawatan RSUPN Cipto Mangunkusumo, dr. Sumariyono SpPD-KR, MPH.

 

The participants walked together across the route of Wisma BNI, Bundaran HI, and ended at Landmark. Arriving at Landmark, dr. Yosephine guided the talkshow with Direktur Utama RSUPN Cipto Mangunkusumo, dr. Lies Dina Liastuti SpJP (K) MARS; Direktur Medik dan Keperawatan RSUPN Cipto Mangunkusumo, dr. Sumariyono SpPD-KR, MPH.; Kepala Pusat Pelayanan Penyakit Langka RSUPN Cipto Mangunkusumo, Dr. dr. Damayanti R Sjarif SpA (K); Ketua Yayasan MPS dan Penyakit Langka Indonesia, Peni Utami; and Duta Penyakit Langka Indonesia, Joanna Alexandra. These talkshow discussed more about rare diseases. Dr. dr. Damayanti R Sjarif, SpA (K) explained what are rare diseases, what are the symptoms, how to diagnose them, and how to treat them. She said, after a long struggle so far, some of the rare diseases can be treated in Indonesia. She invited Sashi, a Phenylketonuria (PKU) patient, to come on to the stage. Sashi, with her limitations, is now fluently mastering five languages ​​at her young age. Duta Penyakit Langka Indonesia, Joanna Alexandra, also shared her experience as a mother of a great child with rare disease. Joanna also motivated parents to keep up the spirit fighting the better future for their children. While listening to the talkshow, participants could also check their blood pressure, cholesterol levels, blood sugar levels, and uric acid levels on the health booth held by the Tim Bantuan Medis (TBM) FKUI. The event was closed by giving some doorprize and Zumba gymnastics.

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