The ASEAN+ Rare Disease Network will undertake programs to understand the impact of rare diseases in the region as well as plan and coordinate annual rare disease programs for both patients and caregivers. As one of their first initiatives, the Network will work together to roll out the Rare Disease Impact Study across the region. The pilot phase of the study was conducted in Singapore between July to December 2016, and involved 152 patients and caregivers across a wide range of rare diseases particular to the country.
Rajakanth R., Executive Director of RAB said: “The aim of the Impact Study is to better understand the needs of rare disease patients and their caregivers that will ultimately catalyze strategic solutions for the management and care of rare disease patients and their families across the region. Once we collate the data from around the region, we hope to be able to speak as one voice and form a coordinated and collaborative care plan.”
Alison Chang, Project Director of the ASEAN+ Rare Disease Network said: “With all the participant countries coming together to form this Network, the rare disease community is now more unified. These collaborative efforts are vital to rare disease patients and their supporters to drive even greater advocacy efforts.”
The Network comprises Yayasan MPS dan Penyakit Langka Indonesia, Department of Genetics at Hospital Kuala Lumpur, We CARE Journey, Philippines Society for Orphan Disorders, Muscular Dystrophy Association (Singapore), Rare Disorders Society (Singapore), Hong Kong Alliance for Rare Disorders, Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group and Vietnam Women’s Union. At the kick-off meeting, participants shared their respective country initiatives in conjunction with Rare Disease Day. The Network, which will also be organizing the 3rd Rare Disease Asia Conference that will be held in Bangkok in 2018, hosted their first planning session for the conference. The Network will connect every three months.
Apart from patient support groups, RAB and the ASEAN+ Rare Disease Network also work together with community partners including Shire, a leading global biotechnology company focused on serving people with rare diseases and other highly specialized conditions.