Kenneth Mah – 2023 SG Silent Hero

Kenneth, together with his wife, founded Rare Disorders Society (Singapore), 12 years back when their child was diagnosed with the rare disease, Pompe Disease.

He was hoping that through this support group, which is now an IPC charity, they can help fellow parents who have a child with a rare disorder to be able to receive support, especially emotional support in this landscape that was fairly unknown many years ago. RDSS does not only accept children with rare but also adults who have been diagnosed with a rare disorder, which is defined as one affecting fewer than 1 in 2000 patients in Singapore.

Through Kenneth’s works, in creating awareness to the public, the medical institutions, the government, to other social service agencies, the rare community has been receiving more attention and eventually the establishment of Rare Disease Fund by SingHealth and supported by the government to fund patients (as last line of help) with 5 rare conditions.

Many caregivers have been touched and impacted by Kenneth, who gave up his career to be a full time caregiver for his daughter.

When I, as a caregiver, was in despair, not knowing the unknowns and the uncertainty of how my girl would grow up to be, he was there to encourage me in this caregiving journey, always spurring me to do even more for my girl and taught me to be more patient even when I see little or no progress. His selfless acts, and whenever caregivers need information and resources, have motivated many parents, to do our utmost of our child, who has a rare illness. This community would not have come this far, if not for Kenneth and his family.

Currently RDSS is supporting 180 patients, and over 700 people, living with a person who has a rare disorder. RDSS has schemes that can help parents / individuals to defray some caregiving costs. They also organize events to bring parents and families together, allowing them to build up this strong network of support.