More than 300 running activists from 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 (MPS) Foundation and Rare Diseases Indonesia held a joint running and walking event in the Car Free Day FX Sudirman area, Jakarta to raise awareness, understanding and support for rare diseases. affects the lives of many people around the world, especially in Indonesia.
Chair of the Indonesian Mucopolly Sacharidosis (MPS) and Rare Diseases Foundation, Peni Utami said, “I am happy, grateful and touched today to be able to gather together with friends, running activists, patients and families, doctors, to celebrate together World Rare Disease Day 2024. Hopefully, there will be synergy The strength of this community has had a big impact on awareness, concern and further support for the Indonesian people for rare diseases that many children suffer from. Rare Disease Day Social Run is our annual event at the Foundation to celebrate goodness on Rare Disease Day so that we can always be grateful and appreciate what we have now. “This year, with the theme “5K Run for Rare”, we are holding it with a different format so that more parties can get involved and collaborate.”
The Mucopolly Sacharidosis (MPS) Foundation and Indonesian Rare Diseases again held a series of events “Commemoration of World Rare Disease Day 2024” which started on February 29 2024 with online activities, namely Patient Zoom Gathering with the theme: “Show Your True Colors” and was attended by rare disease patients from all over Indonesia along with a team of doctors and foundation teams. This activity was held because it is a rare moment that occurs once every 4 (four) years.
Meanwhile, Deputy Chair of the Rare Disease Service Center, RSCM, dr. Klara Yuliarti, Sp.A (K) said, “Thank you to the MPS and Rare Diseases Foundation, as well as all of us, because the Foundation means us, for being here this morning to help enliven and provide kindness and attention as well as encouragement to families and pediatric patients -children with Rare Diseases at the Social Run event, also raising awareness of Rare Diseases. Attention and concern from the community and society is very important because there is an expression to cure sometimes, but to comfort always, which means that the efforts of doctors and health workers sometimes have limits, but togetherness, attention and concern for others can assist further. “In this special moment, hopefully, the reverberations will reach many parties, up to the Government to inspire further support for families and patients.”
Also enlivening this Social Run event, actress and ambassador for Indonesian Rare Diseases, Joanna Alexandra and actress and Foundation volunteer, Vinessa Inez joined the running participants to run to the finish line. A number of supporting events were held on the front page of FX Senayan, including door prizes and fun games.
Exciting performance from singer Aqi and Tiket Band performing a number of their hit songs, “Thank God the event went smoothly and the enthusiasm was extraordinary. “It’s a great pleasure to be able to perform and entertain while watching many participants enliven this event, giving their enthusiasm, love and positivity,” said Aqi and Tiket Band, who have just released a new single entitled Senjana.
About Rare Diseases
Rare diseases are diseases that are life-threatening or impair quality of life with a low prevalence (less than 2000 patients in the population). These rare diseases are often considered unimportant, especially in developing countries, because the number of patients is small, even though collectively there are quite a lot of these rare diseases. Rare Disease Day is celebrated every year on February 29 (a rare date),
It is estimated that 10% of a country’s population suffers from various rare diseases. There are more than 10,000 types of rare diseases that have so far been detected, each of which has a very low incidence rate so that it is called rare. More than 80% of rare diseases are genetically inherited. Only 5% of people with rare diseases can live to grow and develop and contribute to the world if they receive appropriate therapy.
Some of this therapy takes the form of processed food for special medical purposes (“PKMK”). Babies who suffer from rare congenital metabolic disorders from the start of life are unable to consume breast milk (ASI), so the World Health Organization (WHO) and the United Nations International Children’s Emergency Fund (UNICEF) in 2009 recommended the use of PKMK for rare types of diseases. This. This PKMK aims to save lives, as well as reduce the possibility of stunting, which is almost 100% experienced due to adverse reactions to food. In Indonesia, until now, most of the PKMK cannot be produced domestically because they have no commercial value, so their availability is scarce and the price is unaffordable for the majority of sufferers. For this reason, the MPS Foundation and Indonesian Rare Diseases are fighting for PKMK to be guaranteed by the government as the right of every citizen to receive adequate health services. The good intentions of the Minister of Health of the Republic of Indonesia to include PKMK which can prevent stunting in the National Formulary is an infinite joy for patients and their families. To strengthen government support for the availability of PKMK for all people with rare diseases who need it.
About the MPS Foundation and Indonesian Rare Diseases
The MPS Foundation and Indonesian Rare Diseases is a non-profit organization that supports more than 100 children with rare diseases in Indonesia. This organization, which was started in 2016, aims to bring together patients or families with rare diseases, provide a network of help and assistance for them and increase awareness of the general public and government regarding the treatment needs of rare disease patients in Indonesia.
Since 2016 the MPS Foundation and Indonesian Rare Diseases have held various series of events commemorating World Rare Disease Day to raise awareness that rare diseases in Indonesia can be diagnosed and managed.
Achievements that have been achieved by the MPS Foundation and Indonesian Rare Diseases include exemption from import duties on orphan drugs for patients with rare diseases, the issuance of a special regulation by the POM of the Republic of Indonesia number 30 of 2017 which provides easy access to emergency medicines for patients with rare diseases, and financing of orphan food for patients with rare congenital metabolic disorders through Minister of Health Regulation number 29 of 2019.
At the 2021 Indonesian Rare Disease Day Celebration, the MPS Foundation and Indonesian Rare Diseases collaborate with the National Museum to record history and become one of the national monuments throughout the world that celebrate World Rare Disease Day 2021, along with more than 60 national monuments in various countries , such as the Colosseum and Tower of Pisa in Italy, the Empire State Building in the United States, and the Burj Khalifa in the United Arab Emirates in more than 14 other countries.
In 2023, the association of rare disease patients who are members of the MPS Foundation and Indonesian Rare Diseases in commemoration of World Rare Disease Day on February 28 2023 will hold a Panel Discussion between rare disease patients, doctors who treat rare diseases from all over Indonesia and public decision makers regarding The need for PKMK is guaranteed by the government and was also attended online by the Minister of Health of the Republic of Indonesia, namely Mr. Gunadi Gunadi Sadikin, with discussion panelists from the Indonesian Ministry of Health, RSCM Center for Rare Diseases, BPOM and also PPJK.
