Sivasangaran Kumaran

Siva is a caregiver of Swathi Nisha, his daughter, diagnosed with Infantile Pompe (rare disease). Swathi almost died when she was 6 months old due to delayed diagnosis and lack of funds to treat her at that time. After battling through many struggles in her upbringing, Swathi is now 5y old and despite communication and mobility challenges, Swathi is attending pre-school, almost like any normal child. As a rare caregiver and rare disease advocate, Siva strives to discover and bring together rare parents and drive awareness on rare disease in an aim to save and improve quality of life of rare disease patients, especially of children.

Siva received Malaysia Medical Association’s prestigious Healthcare Services Award 2021. Then Malaysia Prime Minister, YAB Tun Dr. Mahathir in 2018, launched Siva's website www.rarediseasemalaysia.com, which has state of Malaysia rare disease, statistics, stories and blogs. The website has its content in 4 major languages to help reach mass public from various ethnicities. Siva climbed Mount Kinabalu to raise funds and awareness for rare disease children. This effort was supported by the Ministry of Health (MOH), Malaysia and successfully raised RM 60,000 funds for the rare disease community. Siva has contributed to the IDEAS whitepaper on Malaysia Rare Disease (2019), which is a key input to MOH's National Rare Disease draft blueprint. Siva primarily advocates on rare disease awareness and national rare disease framework. This is achieved via multi-stakeholders collaboration and close partnership with the Ministry of Health Malaysia, Rare Disease NGO's, think tanks (IDEAS), corporates, and the public.

Siva advocates and speaks at events, appears in news and TV media, drives rare disease activities, as well as digital advocacy. Siva also collaborates closely with medical professionals from Hospital Kuala Lumpur, University Malaya, MMA, and doctors from various hospitals and clinics. Siva partners with many other Malaysia rare disease NGO's such as to promote their rare disease agenda, events and patient support groups. At regional level, Siva collaborates closely with Asia Pacific Alliance of Rare Disease Organisations (APARDO), Rainbow Across Borders, and Rare Disorder Society Singapore. Siva is an active contributor to Global Rare Disease Commission, a framework jointly setup by Takeda, EURODIS and Microsoft. In effort to empower and create young rare disease advocates, Siva partnered with National Organisation of Rare Disease (NORD US) and successfully nominated Malaysia's 1st student to NORD Summit 2019. The students from Brickfields Asia College have also initiated their Rare Disease Student Club, the 1st known private education institute.