Untitled-1.png
APARDO-logo.png

APARDO Conference 2021

Treating Rare Disease As A Priority

RDI-logo.png

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.

HIGHLIGHTS

  • Presentations by and discussions between multiple stakeholders

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

Speakers/Panellists
Untitled-2_edited.png
pic karin.jpg

Karin Jager

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

Dr Lucia Monaco.jpeg

Dr. Lucia Monaco

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

Scott Williams.jpeg

Scott Williams

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

Eric Obscherning.jpeg

Eric Obscherning

Secretariat, APEC Rare Disease Network

Dr William A Gahl.jpeg

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.jpeg

Rachel Yang, M.D. PhD

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

Yann Le Cam.jpeg

Yann LeCam

CEO and Co-founder of EURODIS-Rare Diseases Europe

Goh Choo Beng.jpg

Dr. Goh Choo Beng

Head of APAC Medical Affairs, Takeda

Christine Cockburn.jpg

Christine Cockburn

Head of Support and Operations Rare Cancers Australia

Safiyya Gassman.jpeg

Safiyya Gassman

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

Fiona Wardman.jpeg

Fiona Wardman

CEO, Australasian Hereditary Angioedema

Edmund Lim.jpg

Edmund Lim

Co-Founder and President, Persatuan We Care Journey

Yap Sook Yee.jpeg

Yap Sook Yee

SMA Advocates, We Care Journey, Malaysia

Dr Huy Phuoc Do.jpeg

Dr. Phuoc Huy Do

Vietnamese Organization for Rare Diseases

Salome Mekhuzla.jpeg

Salome Mekhuzla

Director, Global Development, World Federation of Hemophilia

Jaime Christmas.jpg

Jaime Christmas

CEO, New Zealand Amyloidosis Patients Association

Prof Duangrurdee Wattanasirichaigoon.jpeg

Prof. Dr. Duangrurdee Wattanasirichaigoon

Ramathibodi Hospital, Thailand

Prof Cherdchal Nopmaneejumruslers.jpeg

Prof. Cherdchal Nopmaneejumruslers

Vice Director, Faculty of Medicine, Siriraj Hospital, Thailand

Ruth Kuan-Ju Chen.jpeg

Ruth Kuan-Ju Chen

Executive Director, Taiwan Foundation for Rare Disorders

Dr Koh Ai Ling.jpeg

Dr. Koh Ai Ling

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

Prof Thong Meow Keong IMG_1627 ThongMK (2) - Copy.JPG

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.png

Dr. Carmencita Padilla

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

Dr Maria Melanie Alcausin.jpeg

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.jpg

Anders Olauson

Founder and Director, Ågrenska Centre, Sweden

Eileen Li - Biogen.png

Eileen Li

Head of Medical Operations, Japan & APAC, Biogen

Katherine Beaverson.jpg

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:

Sponsor-logos-1.png
colour-strip.png
Agenda
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 >>>

colour-strip.png