Persatuan Penyakit Jarang Jumpa Malaysia (Malaysian Rare Disorders Society)

Formed in 2004 as a families’ support group and officially registered with the Registrar of Societies (ROS) in 2007, with the guidance and support of the Genetic Unit, Department of Pediatrics, University Malaya Medical Centre, the Malaysian Rare Disorders Society (MRDS) is a voluntary organisation dedicated to championing the rights, welfare, and wellbeing of individuals and families living with rare diseases.

Guided by its mission, MRDS provides vital support services to those impacted, while fostering cross-sector collaboration to develop strategies and programmes that raise awareness and drive meaningful action on rare disorders locally and internationally.

MRDS advocates for equitable access to healthcare, education, and employment, and contributes actively to the development of national and regional policies and frameworks. Working alongside multiple stakeholders, MRDS addresses the challenges faced by Persons Living with a Rare Disease (PLWRD), supports the optimisation of care pathways, and promotes inclusive and sustainable systems that respond to the unique needs of Malaysia’s rare disorder community.