We are patient advocate leaders from across the Asia Pacific region representing rare diseases and rare cancers bound together with the goals of not only providing a forum for sharing experiences and learning but also increasing rare disease patients’ voice and addressing priority issues. Some of our members are representatives of disease-specific groups; others were from societies for rare diseases or rare cancers in general; and others representing patient group alliances or networks.
The formation of the Asia Pacific Alliance for Rare Disease Organisations marks the opportunity for patient groups representing rare diseases and rare cancers to work together on common goals, facilitating research in the region, sharing resources and best practices, and collaborating on joint initiatives.
We believe all can embrace who they are,
can define their future, and can change the world.
To help member organizations improve treatment outcomes for those affected by the rare disease (including rare cancers) in the Asia Pacific region.
To be a strong united voice in the Asia-Pacific region on behalf of patients and families (living with) / (affected by) rare diseases.