Table 2 Proposed focus actions for Association of SEA Nations (ASEAN)

1.

Promote equity and increase focus on:

 a) develop a Rare Disease Plan,

 b) establish ASEAN network on rare disease

 c) continuous patient advocacy in ASEAN region;

2.

Consistency of clinical services by:

 a) developed standard treatment guidelines,

 b) identify and invest in rare disease Centre of Excellence,

 c) establish the national registry for rare disease patients

 d) regional sourcing of orphan drugs for greater purchasing power;

3.

Efficient research consortium with:

 a) enough fund for research

 b) genetic database to collect information from these unfortunate patients