People Asked To Care For Treatment Of People With Rare Diseases In Indonesia

JAKARTA - More than 300 activists fled the community and the general public participated in enlivening the Rare Disease Day Social Run event on Sunday morning in the Senayan area of Jakarta.

Celebrating World Rare Disease Day 2024 (World Rare Disease Day), the Mucopolly Sacharidosis Foundation (MPS) and Indonesian Langka Diseases held a joint run and walk event in the Car Free Day area FX Sudirman, Jakarta in an effort to echo awareness, understanding and support of rare diseases that affect the lives of many people around the world, especially in Indonesia.

Chairman of the Mucopolly Sacharidosis Foundation (MPS) and Indonesian Langka Diseases, Peni Utami, admitted that he was grateful and touched to be able to gather with patients and family, doctors, celebrate with World Rare Disease Day 2024.

"Hopefully the synergy of community strength will have a big impact on awareness and concern and further support of the Indonesian people for the rare disease that many children suffer. Rare Disease Day Social Run is our annual event at the Foundation with the aim of celebrating goodness on Rare Disease Day so that we can always be grateful and appreciate what we have today. This year with the theme 5K Run for Rare, we hold it in different formats so that more parties can be involved and collaborate," he said.

Just so you know, the Mucopolly Sacharidosis Foundation (MPS) and Indonesian Langka Diseases again held a series of events "Warning World Rare Disease Day 2024" which began on February 29, 2024 with online activities, namely Patient Zoom Gathering with the theme: Show Your True Colors and attended by rare disease patients from all over Indonesia and a team of doctors and foundation teams. This activity was held because it was a rare moment that occurred once every four years.

Meanwhile, Deputy Chairperson of the Langka Disease Service Center, RSCM, dr. Klara Yuliarti, Sp.A (K) expressed his gratitude to the MPS Foundation and Langka Diseases for the Social Run event.

"At the same time, attention and enthusiasm to families and children's patients with Rare Diseases at Social Run events also echo the awareness of Rare Diseases. The attention and concern of the community and society is very important, because there is an expression to secure sometimess, but to comfort always, which means that the efforts of doctors and health workers sometimes have boundaries, but togetherness, concern and concern for others are able to assist further. In this special moment, hopefully the echo reaches many parties, up to the Government to further inspire support for families and patients," he said.