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.
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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.
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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.
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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.
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We invite you to join us as a sponsor and as a participant.
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HIGHLIGHTS
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Presentations by and discussions between multiple stakeholders
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Opportunities to network with patient advocates from across the Asia Pacific
Speakers/Panellists
Karin Jager
Snr Director of Public Affairs and Patient Advocacy, Growth and Emerging Markets,Takeda
Dr. Lucia Monaco
Chair of the Consortium Assembly, International Rare Disease Research Consortium (IRDiRC)
Scott Williams
Head, Global Public Affairs, Rare Diseases and Rare Blood Disorders at Sanofi Genzyme
Eric Obscherning
Secretariat, APEC Rare Disease Network
Dr. William A. Gahl M.D. PhD
Senior Investigator, Medical Genetics Branch, Director National Human Genome Research Institute Co-Chair Treatment Access WG
Rachel Yang, M.D. PhD
Rare Disease Advocate Representative, China Alliance for Rare Diseases (CHARD)
Yann LeCam
CEO and Co-founder of EURODIS-Rare Diseases Europe
Dr. Goh Choo Beng
Head of APAC Medical Affairs, Takeda
Christine Cockburn
Head of Support and Operations Rare Cancers Australia
Safiyya Gassman
Director, Policy & Public Affairs (Rare Disease & Gene Therapy), Pfizer
Fiona Wardman
CEO, Australasian Hereditary Angioedema
Edmund Lim
Co-Founder and President, Persatuan We Care Journey
Yap Sook Yee
SMA Advocates, We Care Journey, Malaysia
Dr. Phuoc Huy Do
Vietnamese Organization for Rare Diseases
Salome Mekhuzla
Director, Global Development, World Federation of Hemophilia
Jaime Christmas
CEO, New Zealand Amyloidosis Patients Association
Prof. Dr. Duangrurdee Wattanasirichaigoon
Ramathibodi Hospital, Thailand
Prof. Cherdchal Nopmaneejumruslers
Vice Director, Faculty of Medicine, Siriraj Hospital, Thailand
Ruth Kuan-Ju Chen
Executive Director, Taiwan Foundation for Rare Disorders
Dr. Koh Ai Ling
Associate Consultant, KK Women's and Children's Hospital, Singapore
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
Dr. Carmencita Padilla
MAHPS Professor and Chancellor, University of the Philippines Manila
Founding Chairman, Philippine Society for Orphan Disorders
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
Anders Olauson
Founder and Director, Ågrenska Centre, Sweden
Eileen Li
Head of Medical Operations, Japan & APAC, Biogen
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:
Agenda
14 DEC
Half-day session (9:00 AM - 12:30 PM)
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Rare Disease Ecosystem from 2019 to 2021 and What Next?
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Global Access to essential Medicines for Rare Diseases: Implications for APAC
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Leveraging Universal Healthcare to Advance Rare Disease Care in APAC
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15 DEC
Half-day session (9:00 AM - 12:30 PM)
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Thriving with Rare Disease: From Emotional Stress to Emotional Well-Being
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Patient Voice in Drug Development and Policy
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How Genomics is Transforming Rare Disease Diagnosis and Treatment
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Full Agenda Here >>>
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