Alexandra Heumber Perry: Apardo 2023 is brilliantly demonstrated

Alexandra Heumber Perry, CEO of Rare Diseases International, posted on LinkedIn:

“Apardo 2023 What a great opportunity to see the Asia Pacific Alliance of Rare Disease Organisations and the Malaysian Rare Disorders Society in action!

The conference brilliantly demonstrated:

• The PLWRD, youth patient advocates and careers are an example of strength, hope and huge kindness, thank you to remind us the essence of our mission.
• The power of grassroots advocacy, peers to peers learning and multi-stakeholders approach: Apardo members, partners, experts shared inspiring experiences, success stories, and promising on-going initiatives.
• The Malaysian Ministry of Health, leading the example, with a pledge to leave no one behind by including PLWRD in the health priorities, by setting-up a specific fund for RD, and by calling for a global framework for RD.
• The value of treatment and return on investissement in investing in RD newborn’s screening, diagnostics, treatment and care : the importance of having more economic-social burden data examples such as the Hong-Kong study.
• The patient journey’s challenges and solutions: each RD has its specificities, and patient and careers are the drivers in designing meaningful patient care pathways.
• The critical role of real world data from the patients by the patients to increase patient centered affordable and accessible therapies.
• The need for a global framework for actions to catalyze the RD fertile ground and translate commitments into impacts at regional, national and local levels: Apardo members, and the other RD regional alliances have a critical role to play.

Congratulations APARDO and MRDS Durhane Wong-Rieger Nadiah Hanim Abdul Latif, Monica Ferrie, Dr Ritu Jain, Dr. Rachel Yang and all the participants.”

Source: Alexandra Heumber Perry/LinkedIn