Virtual Festival Initiated by Medical Students from All Over Indonesia to Raise Rare Disease Awareness

Recently, Yayasan MPS & Penyakit Langka Indonesia took a part in an event initiated by medical students from all over Indonesia under the Asian Medical Students’ Association (AMSA) Indonesia. This event was a virtual festival, titled "Show Your Rare Festival 2020", held on 22 and 23 August 2020 to celebrate the unique side of every human being. The aim of this festival was to increase public awareness and knowledge about rare diseases. Up until now, children with rare diseases and their families receive a lot of stigma, burdening or making them feel ashamed of their condition. When in fact, rare disease is a uniqueness that need to be supported and loved.

This event consists of several activities, such as virtual charity concert, talk shows for medical students and everyone else who is interested, a photography competition, a graphical “story”, and a digital art competition. The charity concert held on 22 August 2020 was enlivened by many great performances, such as guest stars Reality Club and Hindia. Famous songs from Reality Club –Is It The Answer, 2112, Elastic Hearts, and many more were performed in this virtual concert. Famous songs from Hindia, "Evaluasi" and "Secukupnya", were also sung during the virtual concert. While enjoying the concert, by purchasing tickets through Loket-Gopay, attendees could also participate in a virtual fundraising for children with rare diseases through Kitabisa.com.
The winner of the “Show Your Rare Festival” competition for each category:

DIGITAL ART COMPETITION 
1st winner : Salsabila Rizkya Andriani
2nd winner : Muhammad Rizqullah Ramadhani
3rd Winner : Adinda Nuha Fahira Fahmy

PHOTOGRAPHY COMPETITION 
Favourite Winner : Jeremy Martin Sudjaka
1st winner : Jeremy Martin Sudjaka
2nd winner : Fakhri Danial
3rd Winner : Megandhita Sharasti

STORYGRAPHY COMPETITION
1st winner : Nuha Rahmania
2nd winner : Cintantya Amratistha
3rd Winner : Tiara Nur Ghaffirin

To enjoy the art work of the winners from that competition, go visit Instagram page https://instagram.com/syrf2020?igshid=gn7ckrxoezb3
The next day, 23 August 2020, the event was continued with a talk show, with interesting topic "Get Diagnosed Even During OVID-19 Pandemic: How To Prevent Diagnostic Delay For Rare Disease" together with keynote speaker Prof. Dr.dr.Damayanti Rusli Sjarif, SpA (K) , Chairperson of the Center for Rare Disease Services at Cipto Mangunkusumo-HGRC FMUI and Peni Utami, SE, MM, Chairman of Yayasan MPS & Penyakit Langka Indonesia.

The talkshow was moderated by Yohana Hartya from AMSA-Indonesia. This topic was raised because many patients with rare diseases find difficulties to get a diagnosis during pandemic. That problem is related to change of the focus of health services to overcome the pandemy. It is estimated that 10% of Indonesian population has rare diseases, meaning that there are around 25 million Indonesian with various rare diseases are scattered from Sabang to Merauke. High cost of for diagnostic examinations made it often unreachable. Therefore patient could not get diagnosed. Prof Damayanti suggested that if every 10 people in Indonesia adopt one rare disease patient, then this problem can be resolved in no time.

Early diagnosis is key in managing rare diseases. Early diagnostic will have an impact to better future generation. It is started with one family reaching out, one medical practitioner speaking in a big round, and one school educating its staff and students. Please help us to reach more patients with rare diseases.

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