ORGANIZERS
SPONSORS
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!
HIGHLIGHTS
-
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
Speakers/Panelists
RITU
JAIN
President
Asia Pacific Alliance of Rare Disease Organisations,
DEBRA Singapore
DURHANE
WONG-RIEGER
President
Canadian Organization of Rare Disorders (CORD)
SAFIYYA
GASSMAN
Director
Global Affairs Rare Disease
Pfizer
ERIC OBSCHERNING
Secretariat
APEC Rare Disease Network
KIN PING
TSANG
President
Retina Hong Kong, Hong Kong Alliance for Rare Diseases
LISA
FOSTER
Chief Executive
Rare Disorders New Zealand
YUKIKO
NISHIMURA
President / Founder
NPO ASrid (Advocacy Service for Rare and Infractable Diseases' stakeholders in Japan)
KARLA RUIZ
DE CASTILLA YABAR
Director
ESPERANTRA
NIDHI
SWARUP
Founder & President
Crohn"s & Colitis Society
of Singapore
Agenda
19 OCT
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.
20 OCT
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.
21 OCT
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.
Venue
Chang Yung-fa Foundation International Convention Center
ASIA PACIFIC ALLIANCE OF RARE DISEASE ORGANISATIONS
Be a member of APARDO and stay ahead of the Rare Disease global communities and initiatives.
What
APARDO
Summit 2019
When
19 - 21
October 2019
Where
Taipei, Taiwan
Members' Resources
© 2019 by Asia Pacific Alliance of Rare Disease Orgnaisations