ABOUT THE EVENT
Getting It Done Right: Making Small Interventions in Advancing Rare Disease Programs
Helping patient advocates representing national and regional patient-centric organizations effectively deliver, share best practices, develop skills and adopt coordinated strategies for improving rare disease patient outcomes. Learn common barriers and how to share strategies that RD organizations can successfully employ. Join leading research organizations, public health agencies and biopharma industry for an intense three-day forum!
3 co-located symposia events over 3 days
Presentations by and discussions between multiple stakeholders
Facilitated workshops on strengthening patient voices and impact
More than 20 experts and distinguished speakers
Wide range of topics from genetic screening to treatment access
Opportunities to network with patient advocates from across Asia Pacific
ASIA PACIFIC ADVOCACY SYMPOSIUM
All day session (8:30AM - 4:30PM)
Presentation on Regional and Global Rare Disease Policy Initiatives
Panel on Providing Better Access to Diagnosis and Treatment
Workshop on Policy Advocacy to Improve Conditions for Patiets
This session is organized jointly by APARDO, Taiwan Foundation for Rare Disorders and Rare Diseases International, followed by an internal meeting of APARDO members.
RARE DISEASE AND HUMAN GENETICS SYMPOSIA
All day session (9:00AM - 6:30PM)
Newborn Screening for Genetic Disorders
Multidisciplinary Care for Rare Disease Patients
Experience of Rare Disease Programs in Asia
Overview of the APEC Rare Disease Action Plan
This session is organized jointly by Taiwan Foundation for Rare Disorders and Taiwan Human Genetics Society.
APARDO TRAINING ON APEC RARE DISEASE FRAMEWORK
Morning session (8:30AM - 12:00PM)
TAIWAN GLOBAL HEALTH FORUM
Afternoon session (1:30PM - 5:50PM)
Venue: Taipei International Convention Center
The event is free, but a separate registration is required.
Genomic Perspective - Rare Disease Prevention and Care
Orphan Drugs and Medical Insurance
This session is hosted by the Ministry of Health and Welfare and Ministry of Foreign Affairs Taiwan.
Chang Yung-fa Foundation International Convention Center
11 Zhongshan South Road, Zhongzheng District, Taipei, n/a, 100, Taiwan
ASIA PACIFIC ALLIANCE OF RARE DISEASE ORGANISATIONS
Be a member of APARDO and stay ahead of the Rare Disease global communities and initiatives.
19 - 21
© 2019 by Asia Pacific Alliance of Rare Disease Orgnaisations