• Peni Utami selaku Ketua Yayasan MPS dan Penyakit Langka Indonesia memberikan sambutan pada Peringatan Hari Penyakit Langka Indonesia 2017

    Peni Utami selaku Ketua Yayasan MPS dan Penyakit Langka Indonesia memberikan sambutan pada Peringatan Hari Penyakit Langka Indonesia 2017

  • dr. Damayanti R. Sjarif, Sp.A(K),  menjelaskan tema besar pada Peringatan Hari Penyakit Langka 2017

    dr. Damayanti R. Sjarif, Sp.A(K), menjelaskan tema besar pada Peringatan Hari Penyakit Langka 2017

  • Peni Utami selaku Ketua Yayasan MPS dan Penyakit Langka Indonesia memberikan sambutan pada Peringatan Hari Penyakit Langka Indonesia 2017
  • dr. Damayanti R. Sjarif, Sp.A(K),  menjelaskan tema besar pada Peringatan Hari Penyakit Langka 2017

Indonesia Rare Disease Day 2017

Yayasan MPS dan Penyakit Langka Indonesia and RSUPN Dr. Cipto Mangunkusumo (RSCM) collaborates for the second time to celebrate the second Indonesia Rare Disease Day 2017 on the 28th of February 2017. The theme for this year’s event was “Care for Rare” which invites the public to participate in the care of rare disease patients who are often overlooked due the relatively small number of cases. The issue that was to be raised in this event was to find a solution to gain easy access to orphan food and orphan drugs.

The event included a rare disease patient photo and art exhibition, which was held at the Kiara and Kencana RSCM Lobby from the 27th of February to the 3rd of March 2017. As many as 26 photos and 6 patient’s paintings were displayed at the exhibition. Visitors of RSCM seemed enthusiastic in attending the rare disease patients photo and art exhibition. A number of visitors mentioned that it was hard to believe that a few patients with rare diseases looked like normal children. They were also impressed by the beautiful art that a few of these rare disease patients produced. Two out of 6 paintings got sold during art and photo exhibition week at RSCM. The revenue from the sale was then donated to Yayasan MPS dan Penyakit Langka Indonesia.

The main event of the Indonesia Rare Disease Day 2017 was commemorated at the Kiara RSCM lobby on the 28th of February 2017. As many as 150 people attended from various parties including healthworkers, patients, their families and caregivers, policy makers, namely representatives from the Ministry of Health, Ministry of Finance as well as the Food and Drug Administration. A few representatives from other patient rare disease organizations also attended this event.

On this occassion, Peni Utami as the chairwoman of Yayasan MPS dan Penyakit Langka Indonesia conveyed the vision and mission of the foundation. This event also included a special performance by Rifqah who is one of the rare disease patients who sang the song “Paman Datang”. The attandees of the event participated in singing with Rifqah and had huge smiles on their faces seeing Rifqah singing accompanied by her other friends with rare disease.

Next was a round table discussion attended by 8 panelists from RSCM, customs, Food and Drug Administration, Ministry of Health, the National Commission for Assessment of Drug and representatives from patient’s organization. The discussion started off with a testimony presented by one of the parents of a rare disease patient, dr. Suci Istiqa Mustafa, Sp.M who shares her struggles to access a type of orphan food for her daughter. After this occasion, we expect a solution to gain easy access on orphan food and orphan drugs especially during an emergency case (a life saving situation). This event was closed with a media session which was intended to spread awareness and care to the public about rare diseases.

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