Prof Dr. Thong Meow Keong

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.

Dato Hatijah Binti Ayob

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 Hanim Binti Abdul Latif

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 Binti Muhammad Said

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.  

Noor Muha Bin Aziz

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

Azizah Binti Hamid

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

Mohammad Syafiq Zulkarnain
Committee member

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

Noor Asmin Binti Mohamad Khassim
Committee member

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

Muhammad Azfar Firdaus Bin Azlah
Committee member

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

Nor Azura Binti Abdullah
Committee member

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.

Kartina Ismail Amir
Committee member

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