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Alexandra Heumber Perry: Apardo 2023 is brilliantly demonstrated

Photo taken from Alexandra Heumber Perry/LinkedIn

Dec 1, 2023, 18:56

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.”

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Source: Alexandra Heumber Perry/LinkedIn

Alexandra Heumber Perry Apardo 2023 Asia Pacific Alliance of Rare Disease Organisations cancer Dr Ritu Jain Dr. Rachel Yang Durhane Wong-Rieger Malaysian Ministry of Health Malaysian Rare Disorders Society Monica Ferrie Nadiah Hanim Abdul Latif OncoDaily Oncology PLWRD

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