The image is in two parts. On the left is the black and white “Make the Right Real in Malaysia” logo of The OKU Rights Matter website. To the right of the logo is a photo: Beatrice Leong, Malaysian woman documentary filmmaker, stands in front of her community at the Autistic Pride Day Get-Together, Taman Tugu, June 2023. Beatrice, with a neat black fringe over her eyes and hair swept up in a top curl, is dressed in a black polo shirt and khaki pants. Beatrice holds a white placard with handwritten text (black font): I AM AUTISTIC (Very large font size) ALSO A WOMAN (the remaining text in large font) A FEMINIST AN ACTIVIST A HUMAN

Rare Diseases

The content highlights Malaysia's efforts in addressing rare diseases through various initiatives by the Ministry of Health. It includes the establishment of a national policy, a comprehensive list of rare diseases, informational resources, and a commitment to patient rights, research, and funding at the ASEAN level.

Rare Diseases

Rare Disease Day is the official international awareness-raising campaign which takes place on the last day of February each year, for people living with rare disease, families, carers, and friends around the world.

The main objective of the campaign is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on persons living with rare disease.

Theme:
The 2026 theme for Rare Disease Day focuses on global equity, encouraging people to “Share Your Colours” and “Light Up for Rare” to bring visibility to persons living with rare disease.

What is Rare Disease Day? by Rare Disease Day

Malaysian Rare Disease List by Ministry of Health, Malaysia

National Policy for Rare Diseases in Malaysia by Ministry of Health, Malaysia

Fact Sheet: Understanding the National Policy for Rare Diseases in Malaysia by Ministry of Health, Malaysia

FAQs on the National Policy for Rare Diseases in Malaysia by Ministry of Health, Malaysia

Language Matters For Rare Diseases: Moving From ‘Curses’ To Care — Dr Amar-Singh HSS & Yap Sook Yee by CodeBlue

Malaysia to champion rare diseases at Asean level, Dzulkefly highlights funding, research and patient rights by MalayMail

From Diagnosis to Hope: Making Rare Disease Treatments Work for Malaysian Families by Vital Signs Asia

FAQ’s

Does Malaysia have a Rare Disease Policy?

Yes, Malaysia has a National Policy for Rare Diseases aimed at improving diagnostic access, though advocacy for funding and integration continues.

Are rare disease patients eligible for OKU cards?

Eligibility is determined by the functional impact; many rare diseases result in disabilities that qualify for official OKU status.