{"id":24687,"date":"2024-11-14T18:33:19","date_gmt":"2024-11-14T10:33:19","guid":{"rendered":"https:\/\/hctm.ukm.my\/majlis-perasmian-hari-kesedaran-penyakit-jarang-jumpa-2024\/"},"modified":"2025-01-17T10:16:52","modified_gmt":"2025-01-17T02:16:52","slug":"majlis-perasmian-hari-kesedaran-penyakit-jarang-jumpa-2024","status":"publish","type":"post","link":"https:\/\/hctm.ukm.my\/en\/majlis-perasmian-hari-kesedaran-penyakit-jarang-jumpa-2024\/","title":{"rendered":"Launch of Rare Disease Awareness Day 2024"},"content":{"rendered":"<p><span style=\"font-weight: 400;\">The Rare Disease Awareness Day 2024, organized by the Faculty of Medicine UKM and Hospital Canselor Tuanku Muhriz, was officiated by YB Dato\u2019 Lukanisman Awang Sauni, Deputy Minister of Health Malaysia, on 14 November 2024, at Auditorium of the Canselor Tuanku Ja\u2019afar Medical Education Complex, Hospital Canselor Tuanku Muhriz (HCTM). This program was organized with the aim to increase the public awareness and understanding of the challenges faced by patients with rare diseases. Themed &#8220;Together We Rise: Let\u2019s Unite for Rare Diseases in Malaysia,&#8221; the event called for solidarity in providing comprehensive support for patients and their families.<\/span><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">A rare disease is a condition that is rare or unique, typically affecting only a small group of patients, with an estimated prevalence of one patient per 4,000 to 100,000 people. It is estimated that nearly 5,000 to 9,000 patients in Malaysia suffer from a rare disease, with around 600 patients receiving treatment for rare diseases at Hospital Canselor Tuanku Muhriz and Hospital Tunku Ampuan Besar Tuanku Aishah Rohani, the UKM Children\u2019s Specialist Hospital.<\/span><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">In his speech, the Deputy Minister of Health Malaysia emphasized the challenges faced by patients, including high treatment costs, a lack of specialists, and social stigma. He also urged all relevant stakeholders to work together in developing specific guidelines to ensure that patients receive holistic and inclusive care.<\/span><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">According to Prof. Datin Norlinah in her public lecture, there are approximately 7,000 known rare diseases worldwide, but in Malaysia, only 502 rare diseases are listed by the Ministry of Health (KKM). She added that 80% of these rare diseases are related to genetic disorders, and most patients do not receive an accurate diagnosis or are diagnosed late.<\/span><\/p>\n<p style=\"text-align: justify;\"><span style=\"font-weight: 400;\">Also present at the event were YBhg. Prof. Dato\u2019 Dr. Hanafiah Harunarashid, Pro Vice Chancellor of the Kuala Lumpur Campus of UKM, YBhg. Prof. Datin Dr. Marina Mat Baki, Dean of the Faculty of Medicine UKM, YBhg. Dato\u2019 Dr. Azmi Baharudin, Director of HCTM, YBhg. Prof. Datin Dr. Norlinah Mohamed Ibrahim, Deputy Dean (Postgraduate) of the Faculty of Medicine UKM and Chairperson of the Program Committee, faculty management members from the Faculty of Medicine UKM, senior UKM officers, participants, and staffs.<\/span><\/p>\n","protected":false},"excerpt":{"rendered":"<p>The Rare Disease Awareness Day 2024, organized by the Faculty of Medicine UKM and Hospital Canselor Tuanku Muhriz, was officiated by YB Dato\u2019 Lukanisman Awang Sauni, Deputy Minister of Health Malaysia, on 14 November 2024, at Auditorium of the Canselor Tuanku Ja\u2019afar Medical Education Complex, Hospital Canselor Tuanku Muhriz (HCTM). This program was organized with [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":24685,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_links_to":"","_links_to_target":""},"categories":[152,109],"tags":[],"class_list":["post-24687","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-2024-en","category-berita-en"],"_links":{"self":[{"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/posts\/24687","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/comments?post=24687"}],"version-history":[{"count":6,"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/posts\/24687\/revisions"}],"predecessor-version":[{"id":25043,"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/posts\/24687\/revisions\/25043"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/media\/24685"}],"wp:attachment":[{"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/media?parent=24687"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/categories?post=24687"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hctm.ukm.my\/en\/wp-json\/wp\/v2\/tags?post=24687"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}