Having a regional organisation which represents small patient populations might be beneficial in facilitating orphan drug and rare disease legislation, highlighting reimbursement needs for rare disease patients and increase visibility on improving market access policies. There has been well established groups such as the National Organisation for Rare Disorders (NORD) in the United States and the European Organisation for Rare Disorders (EURORDIS) in Europe, however, this is lacking in Asia.
Despite the presence of national rare disease alliances and organisations, a single entity to represent Asia Pacific as a whole has been lacking. The presence of a collective group “echoes the multi-stakeholder ‘call to action’ for improved access to care and treatment for rare diseases in the Asia-Pacific region.”
A steering committee meeting held in November 2014 during the International Rare Disease Research Consortium conference in Shenzhen, China finalised the official formation of the Asia-Pacific Alliance of Rare Disease Organisations (APARDO), which was also legally registered in Singapore. Representatives from the Chinese Organisation for Rare Disorders, the Japan Patient Association, the Indian Organisation for Rare Disorders, New Zealand Organisation for Rare Disorders, Rare Voices Australia, and CNETS (Carcinoid and Neuroendocrine Tumour Society) Singapore were involved in the meeting which was facilitated by the Canadian Organisation for Rare Disorders.
Formalising the formation of APARDO is a first step to enhance research in the region, collaborate on joint initiatives and share resources and best practices. To advance further, a harmonisation of orphan drug designation, policies and having a common regulator in Asia would be vital to ensure APARDO can effectively be the voice of the rare disease community in the region.
To read the full report on An Asia Pacific Alliance for Rare Diseases, D. Wong-Rieger et al., visit Springer’s website here.