25 May 2026
Sepeda Amal Borneo 2026 calls on public support to help fund life-saving surgeries and care for children facing life-threatening and often overlooked medical conditions.
Tag: rare diseases
14 April 2026
Letter
The Silent Struggle: Why Malaysia Must Wake Up To Rare Immune Disorders — Dr Zarina Thasneem Zainudeen & Dr Intan Juliana Hamid
By integrating clinical expertise with genetic insights and expanded screening, Malaysia can ensure that every child’s genetic blueprint leads to a healthy future.
10 March 2026
Letter
Why The Ministry Of Health’s RM29 Million Proposal For Biologic Therapies Should Be Supported — PAM
The Psoriasis Association of Malaysia says a dedicated biologics programme can help prevent disability, restore productivity, and significantly improve the lives of Malaysians living with severe psoriatic condition.
15 October 2025
For families living with rare or low-awareness conditions, inclusion isn’t about creating new programmes — it’s about making sure the system itself finally lets them through.
8 October 2025
Letter
Beyond Pandemics: Why Rare Diseases Must Be Part of Malaysia’s Public Health Agenda — Saida Abu Bakar
If Malaysia fully implements its Rare Disease Policy, it can become a regional model for integrating rare diseases into public health systems, in line with WHO and Asean principles on health equity and system resilience.
12 September 2025
Letter
Rare Diseases Post Policy Launch: Building An Equitable, Whole-Of-Society Future — Assoc Prof Dr Teguh Haryo Sasongko Et Al.
With clear equity rules, Malaysia can protect the vulnerable without destabilising the system and build justice that is measurable, defendable, and trusted.
29 August 2025
Letter
From Pre-Launch To Action: Building A Strong Rare Disease Policy For Malaysia — Saida Abu Bakar
Families affected by rare diseases face unique and overwhelming challenges: delayed or uncertain diagnoses, limited access to treatment, heavy financial strain, fragmented care pathways, and psychosocial pressures, including stigma and caregiver burnout.
10 November 2023
Generalised pustular psoriasis (GPP) is a rare and severe autoinflammatory disease that is often misdiagnosed and significantly affects the quality of life of patients in Malaysia, who have to deal with stigma and poor access to effective treatment.
12 October 2023
Experts call for a multifaceted approach to manage Neurofibromatosis Type 1 (NF1), a rare disease. "NF1 is a disease that requires input from various medical teams, including neurologists, geneticists, hemato-oncologists, surgeons, and other experts."
25 July 2023
World
Boehringer Ingelheim Uses Fashion To Highlight Experiences Of Patients Living With Rare Skin Disease
Boehringer Ingelheim highlights the experiences of patients living with generalised pustular psoriasis (GPP) through fashion at the World Congress of Dermatology. Mannequins in the collection are made from shards of glass, paper, knives, and razor blades.