rare diseases Archives

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

Letter

Budget 2026: Where Do Rare Diseases Fit? Everywhere — Saida Abu Bakar

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

Malaysia

Generalised Pustular Psoriasis: A Rare, Severe, And Often Misdiagnosed Disease In Malaysia

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

Malaysia

Multidisciplinary Approach For Rare Disease Neurofibromatosis Type 1

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.

9 May 2023

Malaysia

Pfizer Calls For More Awareness Of Transthyretin Amyloid Cardiomyopathy (ATTR-CM)

ATTR-CM is caused by unstable transthyretin proteins that misfold and aggregate into amyloid fibrils that build up in the heart and other parts of the body.

26 April 2023

Malaysia

Fabry Disease Patient Story: Merpati Ahmad

For Merpati Ahmad, a schoolteacher, husband and father, the burden of Fabry disease was a heavy blow but one he chooses to bear with grace and acceptance.

Tag: rare diseases

Why The Ministry Of Health’s RM29 Million Proposal For Biologic Therapies Should Be Supported — PAM

Budget 2026: Where Do Rare Diseases Fit? Everywhere — Saida Abu Bakar

Beyond Pandemics: Why Rare Diseases Must Be Part of Malaysia’s Public Health Agenda — Saida Abu Bakar

Rare Diseases Post Policy Launch: Building An Equitable, Whole-Of-Society Future — Assoc Prof Dr Teguh Haryo Sasongko Et Al.

From Pre-Launch To Action: Building A Strong Rare Disease Policy For Malaysia — Saida Abu Bakar

Generalised Pustular Psoriasis: A Rare, Severe, And Often Misdiagnosed Disease In Malaysia

Multidisciplinary Approach For Rare Disease Neurofibromatosis Type 1

Boehringer Ingelheim Uses Fashion To Highlight Experiences Of Patients Living With Rare Skin Disease

Pfizer Calls For More Awareness Of Transthyretin Amyloid Cardiomyopathy (ATTR-CM)

Fabry Disease Patient Story: Merpati Ahmad

After 15 Years Of Training, This Is What A Subspecialist Doctor Earns In Malaysia — Physician

Master’s Graduates Run Hospitals On ‘Study Leave’ But Can’t Apply For Subspecialty Training — Physician

House Officers Are Treated Like Modern Slaves — Dr Ghazali Ahmad

Medical Officer Duties, Service Load Strain FMS Gazettement Training — Government Doctor

Beyond Turf: Safeguarding Malaysia’s Clinical Core Before It Thins — Dr Musa Mohd Nordin