OUR TEAM

Prof Thong is a paediatrician, clinical geneticist, academic researcher and teacher. A strong proponent of healthcare providers to care and advocate for patients with rare diseases.

Since 1970, interned and trained in manpower, social and welfare whilst working with a British company for 10 years. Upon resignation, helped formed and served, to date, with three health related NGOs namely – the Heart, Tobacco advocacy and Rare Disease.

Nadiah is a sustainability, child & RD rights advocate, committed to championing compassion, collaboration and cohesion to solve pressing and future needs for the RD community.

Allida is a data-driven RD mentor, committed in developing young leaders & entrepreneurs and passionate about empowering RD families. Promotes social responsibilities in the development of young professionals.

Muha is a person living with RD who promotes Independent Living philosophy. Believes in equal opportunities, self-determination, and self-respect.

Azizah helps MRDS make critical financial decisions by collecting, tracking and verifying the finances through her motto of minimizing cost and maximising results.

Proud to be born with Hypohidrotic Ectodermal Dysplasias , Heroes World Rare Disease Day 2021. MRDS Representative for Ectodermal Support Group Malaysia

An affectionate advocate of special needs children's access to health care and education. Asmin’s daughter Mawaddah, is diagnosed with a rare chromosome disorder called Wolf-Hirshhorn Syndrome

An RD advocate living with albinism who is dedicated to raising awareness and championing the rights of people living with rare diseases.

Azura is a social entrepreneur of The Batik Craft. Her team provides training, coaching and mentoring for housewives (B40 families) to generate income from home. Azura, who was a caregiver for more than 10 years to her late husband with MELAS Syndrome, is also an advocate for people with the syndrome.

Tina is a karate exponent and an inclusive homeschooling advocate who believes that access to quality experiential education is a right that everyone should have access to