APARDO Summit 2019

Regional Collaboration for Global Change

Sat, 19 October 2019, 8:30 AM - Mon, 21 October 2019, 5:30 PM [TST]

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

ORGANIZERS
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SPONSORS
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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

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DURHANE
WONG-RIEGER

President

Canadian Organization of Rare Disorders (CORD)

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SAFIYYA
GASSMAN

Director

Global Affairs Rare Disease

Pfizer

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ERIC OBSCHERNING

Secretariat

APEC Rare Disease Network

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KIN PING
TSANG

President

Retina Hong Kong, Hong Kong Alliance for Rare Diseases

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LISA
FOSTER

Chief Executive

Rare Disorders New Zealand

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YUKIKO
NISHIMURA

President / Founder

NPO ASrid (Advocacy Service for Rare and Infractable Diseases' stakeholders in Japan)

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KARLA RUIZ
DE CASTILLA YABAR

Director

ESPERANTRA

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NIDHI
SWARUP

Founder & President

Crohn"s & Colitis Society

of Singapore

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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.

Register Here

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.

Register Here

 
Venue
Chang Yung-fa Foundation International Convention Center

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

Phone+886 2 2351 6699

 
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

Contact Us

To learn more, don't hesitate to get in touch.

admin@apardo.org     

Tel. No. +65 6337 1900

© 2019 by Asia Pacific Alliance of Rare Disease Orgnaisations