MPSdanpenyakitlangkaindonesia

MPSdanpenyakitlangkaindonesia Yayasan MPS dan penyakit langka indonesia bergerak pada non profit organization, yayasan ini didirik

Behind every policy, there are families, children, and stories that matter.Grateful to be part of a regional movement th...
02/12/2025

Behind every policy, there are families, children, and stories that matter.
Grateful to be part of a regional movement that continues to fight for those living with rare conditions. One step, one voice, one Southeast Asia.”

Yesterday at Rumah Sakit Cipto Mangunkusumo (RSCM) and Human Genetic Research Centre (HGRC IMERI FKUI), surrounded by ou...
02/12/2025

Yesterday at Rumah Sakit Cipto Mangunkusumo (RSCM) and Human Genetic Research Centre (HGRC IMERI FKUI), surrounded by our brave children and families from Yayasan MPS dan Pasien Langka Indonesia, we were blessed by the presence of Dr. Durhane Wong-Rieger and Prof. Damayanti R. Syarif.
Their warmth, their encouragement, and their belief in our fight reminded us of a simple truth:
✨ Diagnosis is hope.
It is the moment when confusion becomes clarity, when fear begins to soften, and when a real path to treatment finally opens.
Together, we hold on to hope — for a future where every rare child is seen, understood, and treated.

Terima kasih kepada APARDO (Asia Pacific Alliance of Rare Disease Organisation) atas undangan mengikuti konferensi pada ...
02/12/2025

Terima kasih kepada APARDO (Asia Pacific Alliance of Rare Disease Organisation) atas undangan mengikuti konferensi pada 29–30 November 2025.
Suatu kehormatan dapat berdiskusi dan berbagi visi bersama para ahli, pemimpin organisasi, dan komunitas pasien langka dari seluruh Asia Pasifik.

Konferensi ini menegaskan kembali pentingnya kolaborasi lintas negara dalam meningkatkan diagnosis, akses terapi, dan kualitas hidup pasien langka.

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