PHL to host Asia Pacific conference on rare disease
MANILA – Rare disease leaders and advocates from across the Asia Pacific region will be gathering for the annual conference of the Asia Pacific Alliance of Rare Disease Organizations (APARDO) on November 22-24, 2024. The annual conference aims to serve as a platform for leaders and advocates to share best practices and promote collaboration toward a common strategy and its translation to action.
Comprised of patient advocate leaders and representatives of rare disease patient alliances and networks in the Asia Pacific Region, APARDO aims to amplify the voice of rare disease patients, address priority issues of persons and families living with a rare disease, facilitate research and the sharing of resources and experiences, and promote collaboration in the region.
This year, the two-day conference will be headlined by Dr. Teodoro Herbosa, Secretary of the Department of Health, who will talk about advancing rare disease as a key priority in universal health coverage in the Philippines. The international gathering will kick off with welcome messages from Dr. Durhane Wong-Rieger, President of APARDO, and the country hosts, Ms. Cynthia Magdaraog and National Scientist Carmencita Padilla, as the President and Founding Chairperson of the Philippine Society for Orphan Disorders, respectively. The conference plenary sessions will cover newborn bloodspot screening, genomic sequencing, diagnostics and care models, and the role of healthcare care professionals and patient communities.
The second day of the conference will focus on access to drugs, treatments, and therapies for lower middle-income countries (LMICs) which will be initiated by Dr. Wong-Rieger’s presentation on the global determinants of access. The conference will also feature a panel discussion on access to treatment innovation and a workshop on designing access strategies for LMICs. APARDO 2024 will conclude with a joint closing statement from PSOD and APARDO.
Local pre-conference activities for health professionals on birth defects management and the stakeholder consultation on the Philippine Integrated Rare Disease Management Program will also be held on November 22, 2024.
Last year, the APARDO Conference was held in Kuala Lumpur, Malaysia.
For more details on the APARDO 2024, please visit the conference website (https://www.apardo.org/apardo-conference-2024).
About the Philippine Society for Orphan Disorders (PSOD)
The Philippine Society for Orphan Disorders (PSOD) is a non-profit organization whose mission is to uphold the primary concerns and welfare of individuals with rare disorders in the Philippines by directly addressing, supporting and protecting their health and general well-being. PSOD is dedicated to being the central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for individuals with orphan or rare disorders. To learn more about Rare Disease, visit http://www.psod.org.ph