SIVASANGARAN KUMARAN

SIVASANGARAN KUMARAN

SIVASANGARAN KUMARAN

Sivasangaran Kumaran (Siva) became an active rare disease advocate in Malaysia ever since his beloved daughter, Swathi Nisha Nair, diagnosed with Infantile Pompe.

Acknowledging the need for greater awareness on rare disease and its implications to children’s life, Siva created rarediseasemalaysia.com, a multilingual portal containing key information about the state of Malaysia rare disease, the challenges, and recommended solutions. The portal was launched by Malaysia’s 7th and worlds oldest Primer Minister, Tun Dr. Mahathir on 28th November 2018, who also acknowledges the need for awareness and multi-stakeholders support to save innocent lives, especially children’s with a rare disease.

Siva has been partnering closely with most of Ministry of Health Malaysia, Malaysia Rare Disease NGO’s, parents and community alike from local, regional and global – to elevate the rare disease awareness via media and news coverage, social media, rare disease themed activities and many others.