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APARDO Conference 2021

Treating Rare Disease As A Priority


Day 1: Tuesday, December 14 (9:00AM – 12:30PM SGT)

Day 2: Wednesday, December 15 (9:00AM – 12:30PM SGT)

Registration is Free

About The Event
Getting It Done Right: Making Small Interventions in Advancing Rare Disease Programs

The Asia Pacific Alliance of Rare Disease Organizations (APARDO) brings together patient advocate leaders from across the Asia Pacific region representing rare diseases and rare cancers, with the goals of sharing experiences and learning, increasing the patient voice, and working  together on common goals, facilitating research, sharing resources and best practices, and collaborating on joint initiatives.

In 2020, countries across the Asia Pacific (APAC) region were all affected by COVID-19 with varying impact but common challenges of delays and denials for access to diagnosis, care, treatment, support and prevention.

What was also shared was the commitment to "staying the course" on rare disease and the hope that 2021 was a gradual return to "normal". Unfortunately, we have not been able to return to an "in-person" conference but we will be holding our 2021 December regional conference.

As we collectively pivot from the pandemic, we are looking forward to renewing our focus on essential rare disease initiatives. The theme of the conference is “Treating Rare Disease as Priority” with six planned sessions, as outlined in the attached agenda. 

We invite you to join us as a sponsor and as a participant.


  • Presentations by and discussions between multiple stakeholders

  • Opportunities to network with patient advocates from across the Asia Pacific

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Karin Jager

Snr Director of Public Affairs and Patient Advocacy, Growth and Emerging Markets,Takeda

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Dr. Lucia Monaco

Chair of the Consortium Assembly, International Rare Disease Research Consortium (IRDiRC)

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Scott Williams

Head, Global Public Affairs, Rare Diseases and Rare Blood Disorders at Sanofi Genzyme

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Eric Obscherning

Secretariat, APEC Rare Disease Network

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Dr. William A. Gahl M.D. PhD

Senior Investigator, Medical Genetics Branch, Director National Human Genome Research Institute Co-Chair Treatment Access WG

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Rachel Yang, M.D. PhD

Rare Disease Advocate Representative, China Alliance for Rare Diseases (CHARD)

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Yann LeCam

CEO and Co-founder of EURODIS-Rare Diseases Europe

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Dr. Goh Choo Beng

Head of APAC Medical Affairs, Takeda

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Christine Cockburn

Head of Support and Operations Rare Cancers Australia

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Safiyya Gassman

Director, Policy & Public Affairs (Rare Disease & Gene Therapy), Pfizer

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Fiona Wardman

CEO, Australasian Hereditary Angioedema

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Edmund Lim

Co-Founder and President, Persatuan We Care Journey

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Yap Sook Yee

SMA Advocates, We Care Journey, Malaysia

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Dr. Phuoc Huy Do

Vietnamese Organization for Rare Diseases

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Salome Mekhuzla

Director, Global Development, World Federation of Hemophilia

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Jaime Christmas

CEO, New Zealand Amyloidosis Patients Association

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Prof. Dr. Duangrurdee Wattanasirichaigoon

Ramathibodi Hospital, Thailand

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Prof. Cherdchal Nopmaneejumruslers

Vice Director, Faculty of Medicine, Siriraj Hospital, Thailand

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Ruth Kuan-Ju Chen

Executive Director, Taiwan Foundation for Rare Disorders

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Dr. Koh Ai Ling

Associate Consultant, KK Women's and Children's Hospital, Singapore

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Dr. Meow-Keong Thong

MBBS, MPaeds, MD, FHGSA (Clinical Genetics), FAMM, FASc
Professor of Paediatrics and Consultant Clinical Geneticist
Head, Genetics & Metabolism Unit, Department of Paediatrics, Faculty of Medicine, University of Malaya, Malaysia

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Dr. Carmencita Padilla

MAHPS Professor and Chancellor, University of the Philippines Manila
Founding Chairman, Philippine Society for Orphan Disorders

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Dr. Marla Melanie Alcausin

Director of the Newborn Screening Reference Center Research Assistant Professor at the National Institutes of Health of the University of the Philippines Manila

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Anders Olauson

Founder and Director, Ågrenska Centre, Sweden

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Eileen Li

Head of Medical Operations, Japan & APAC, Biogen

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Katherine Beaverson

Senior Director and Patient Advocacy Lead, Rare Disease Research Unit, Pfizer

Jill Morjarla

Senior Business Development Director, IQVIA Asia Pacific

Harpeet Ram

President and Founder , EVR Consulting LLC

Our Sponsors:

14 DEC
Half-day session (9:00 AM - 12:30 PM)
  • Rare Disease Ecosystem from 2019 to 2021 and What Next?

  • Global Access to essential Medicines for Rare Diseases: Implications for APAC

  • Leveraging Universal Healthcare to Advance Rare Disease Care in APAC

15 DEC
Half-day session (9:00 AM - 12:30 PM)
  • Thriving with Rare Disease: From Emotional Stress to Emotional Well-Being

  • Patient Voice in Drug Development and Policy

  • How Genomics is Transforming Rare Disease Diagnosis and Treatment

Full Agenda Here >>>

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