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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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