APARDO Summit 2019

Saturday, 19 October 2019 8:30 AM - Monday, 21 October 2019 5:30 PM [CST]

11 Zhongshan South Road, Zhongzheng District, Taipei, n/a, 100, Taiwan

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Patient Advocates Partial Approval - $200.00

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Academics & Physicians Partial Approval - $400.00

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Saturday, 19 October 2019 8:30 AM - Monday, 21 October 2019 5:30 PM [CST]

Chang Yung-fa Foundation, 11 Zhongshan South Road, Taipei, n/a, 100, Taiwan.

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!

Asia Pacific Advocacy Symposium

Saturday, 19 October  (08:30AM - 04:30PM) 

This session is organized jointly by APARDO, Taiwan Foundation for Rare Disorders and Rare Diseases International (RDI), followed by an internal meeting of APARDO members. 

-  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 of Patients

Rare Disease and Human Genetics Symposium

Sunday, 20 October  (09:00AM - 06:30PM)

This session is organized jointly by Taiwan Foundation for Rare Disorders and Taiwan Human Genetics Society.

-  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

APARDO Training on APEC Rare Disease Framework

Monday, 21 October  (08:30AM - 12:00PM)

Taiwan Global Health Forum

Monday, 21 October  (01:30PM - 05:50PM)

This session is hosted by the Ministry of Health and Welfare and Ministry of Foreign Affairs Taiwan.

-  Genomic Perspective - Rare Disease Prevention and Care

-  Orphan Drugs and Medical Insurance

-  The event is free, but a separate registration is required.

 

 

 

 

 

William Claxton

Asia Pacific Alliance of Rare Disease Organisations (APARDO) is a non-profit organization consisting of patient advocate leaders from across the Asia Pacific region representing rare disease and rare cancers bound together with the goals of not only providing a forum for sharing experiences and learning but also increasing rare disease patients’ voice and addressing priority issues.

Contact the Organizer