rare diseases Archives

25 July 2023

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.

1 March 2023

World

Why Life Is About To Get Better For Patients With Rare Diseases

‘Rare’ diseases are anything but. And with cheaper DNA sequencing, patients’ lives will be transformed.

17 February 2023

Malaysia

An Insight Into The Life Of A Patient With Rare Lung Disease

For Syed Johari, it took six months, two private hospital visits, two lung specialists' consultations, a hospitalisation episode, five days of antibiotics treatment, multiple scans and tests, and a biopsy before he was finally diagnosed with idiopathic pulmonary fibrosis, a rare lung disease.

23 August 2022

Letter

From Rare Inflammatory Disorder To Cancer: Early Screening Is Vital – S. Mathana Amaris Fiona

A patient started showing symptoms last year, was diagnosed with RF in February, but died from advanced cancer, a disease he never knew of at the start.

16 March 2022

Malaysia

MOH Forming Trust Fund, Database For Rare Diseases

The Health Ministry added another RM1 million in allocation to the Genetics Lab at Tunku Azizah Hospital in KL to strengthen laboratory testing for patients with rare diseases.

2 March 2022

Malaysia

Amar: Health Workers Need More Training On Children With Disabilities

Most doctors have very limited knowledge and skills to evaluate children with disabilities and are not able to correctly identify children with learning disabilities, says Dr Amar.

28 February 2022

Letter

SMA-LL Steps To Keep Moving Forward — Yap Sook Yee & Edmund Lim

There must be better understanding and support for people living with rare diseases in Malaysia.

6 December 2021

Malaysia

Getting To The Heart Of Angiosarcoma: Knowing About Rare Diseases Can Save Your Life

Specific screenings can be used to detect rare diseases, and it is important to get a consultation once any symptoms arise.

Tag: rare diseases

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

Why Life Is About To Get Better For Patients With Rare Diseases

An Insight Into The Life Of A Patient With Rare Lung Disease

From Rare Inflammatory Disorder To Cancer: Early Screening Is Vital – S. Mathana Amaris Fiona

MOH Forming Trust Fund, Database For Rare Diseases

Amar: Health Workers Need More Training On Children With Disabilities

SMA-LL Steps To Keep Moving Forward — Yap Sook Yee & Edmund Lim

Getting To The Heart Of Angiosarcoma: Knowing About Rare Diseases Can Save Your Life

Landmark UN Report Highlights Malaysia’s Mandatory Death Penalty Abolition For Drug Offences

Malaysia Approves First Long-Acting Injectable HIV Prevention Drug

At Selayang Hospital’s Understaffed Emergency Department, Doctors Allege Abuse By Patients’ Relatives

The Suffering Family Medical Practitioner — Dr Sng Kim Hock

MOH Places 40% Cap On Foreign Nurses In Private Health Care Facilities