PSOD joins Rare Disease Asia Conference 2016

KUALA LUMPUR – The Philippine Society for Orphan Disorders, Inc (PSOD) led the Philippine delegation to the 2nd Rare Disease Asia Conference (RDAC). The three-day conference was held from November 17 to 19 in Kuala Lumpur, Malaysia.

The PHL group was headed by UP Manila Chancellor and PSOD Founding Chairman Dr. Carmencita Padilla, PSOD President Mrs. Cynthia Magdaraog, PSOD Coordinator Janet Francisco, Institute of Human Genetics-NIH UP Manila Director Dr. Mary Ann Chiong, and Dr. Anthony Calibo of the Department of Health Children’s Health Development Division.

 

Themed “Working In One Voice”, the second Rare Disease Asia Conference brought together stakeholders of the rare disease community in Asia and beyond. These include rare disease patients, as well as all who support them – caregivers, physicians, allied healthcare professionals, patient support organizations, pharmaceutical representatives and health officials.

 

As part of the conference, Dr. Padilla gave a plenary talk on the Philippine Rare Disease Story while Mrs. Magdaraog presented about Health Technology Assessment (HTA) as a tool for participation in policy decision for rare disease patients in the Philippines. On the other hand, Dr. Chiong gave a talk on the Lysosomal Storage Disease Registry of the IHG.

RDAC 2016 was organized by Rainbow Across Borders, hosted by Malaysian Rare Disorders Society, Malaysia Lysosomal Diseases Association and Malaysia Metabolic Society, and supported by patient organizations throughout Asia. #