For the first time, efforts to manage rare disease across Asia were consolidated and promulgated at the inaugural Rare Disease Asia Conference. Organised by the Rainbow Across Borders, the conference was held at Concorde Hotel from 12-13 March.
Themed Love is Not Rare, the conference brought together almost 300 members of the multi-stakeholder rare disease community, including patients, their families, specialist physicians and therapists, patient support groups as well as officials from Japan, Taiwan, Thailand, Malaysia, the Philippines, India, Vietnam and Singapore.
Rainbow Across Borders has put together 18 stories of rare disease patients chronicling their challenges, courage, resilience and hope into a book also titled Love is Not Rare, which will used as resource material at the conference.
Rare Disorders Society was proud to be involved and our Vice President, Kenneth Mah, was appointed as the treasurer in the organising committee. RDSS children were also involved in the opening performance.
Together, our collective efforts will build an inclusive society where people living with rare diseases will be well protected and taken care.