RDI CEO Alexandra Heumber Perry participated in the 2023 Asia Pacific Alliance of Rare Disease Organisations (APARDO) Conference from 24-26 November. The event, co-organized by the Malaysian Rare Disorders Society, brought together 150 stakeholders from 15 countries across the Asia-Pacific region, including Malaysia, Indonesia, India, Korea, Nepal, China, Hong Kong, the Philippines and Australia.
The conference was a testament to the power of grassroots advocacy, peer-to-peer learning and a multi-stakeholder approach: APARDO members, partners and experts shared inspiring experiences, success stories, and promising ongoing initiatives.
The Malaysian Ministry of Health, leading by example, pledged to leave no one behind by including PLWRD in its health priorities, including setting up a specific fund for rare diseases and calling for a global framework for rare diseases.
Conference speakers underlined the value of treatment and the importance of investing in newborn screening, diagnosis and care for rare diseases, as well as the value of economic social burden data.
PLWRD shared their challenges and solutions, showing that each rare disease has its specificities, but that patients and carers are the drivers in meaningful patient care pathways. Further, real-world data, from the patients and by the patients, is critical for increasing patient-centered, affordable and accessible therapies.
The conference emphasized the need for a global framework for action to take advantage of the fertile ground of the moment for translating commitment into impact at the regional, national and local levels and the critical role that APARDO members and other regional alliances play within the rare disease ecosystem.