Regional Rare Disease

Regional Rare Disease Access to Care Forum

14 June 2024 (Friday)

10.30am-2.30pm SGT | 9.30am-1.30pm BKK | 12.30-4.30pm SYD

Boehringer Ingelheim welcomes you to join our virtual Rare Disease Access to Care Forum, which brings together international experts, patient and policy advocates to dialogue on patient organization involvement in improving health outcomes for rare diseases across ASEAN, South Korea, Australia and New Zealand regions.

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Agenda

Welcome Address

Eleanor Tan

Eleanor Tan

Patient Engagement Lead, ASKAN

Bronwyn Lewis

Bronwyn Lewis

Head of Global Patient Engagement

William Hwang

Prof William Hwang

Senior Consultant, National Cancer Centre Singapore

  • Welcome & Agenda | Eleanor Tan

  • Opening Address | Bronwyn Lewis

  • Patient Engagement in the Public Healthcare System | Prof William Hwang

Part A: Health Technology Assessment and Patient Involvement

Fiona Pearce

Fiona Pearce

Senior Advisor, Agency for Care Effectiveness

Richard Vines

Richard Vines

Co-Founder, Rare Cancers Australia

  • Introduction to HTA and the Importance of Patient Engagement in HTA | Fiona Pearce

  • Role of Rare Disease Organizations in Speeding up Access for Patients | Richard Vines

  • Panel Session with HTA Patient Experts moderated by Bronwyn Lewis

Part B: Patient Organizations Supporting Healthcare Delivery

Janet Francisco Kochis

Janet Francisco-Kochis

Program Officer, Philippine Society of Orphan Disorders (PSOD)

Harry Patsamanis

Harry Patsamanis

General Manager - Consumer Programs and Partnerships, Lung Foundation Australia

Stef Cormack

Stef Cormack

Director of Services, Action for Pulmonary Fibrosis

Jaime Macedo

Jaime Macedo

Cancer Navigation Program Lead, Rare Cancers Australia

  • Gaps in Healthcare Delivery in Rare Diseases | Janet Francisco-Kochis

  • Patient Organization-led Peer Connect and Nurse Care Programs | Harry Patsamanis

  • Pulmonary Fibrosis Befriender Program | Stef Cormack

  • Rare Cancer Australia (RCA) Patient Support Program | Jaime Macedo

Part C: Patient Organizations Involved in Policy

Kim Sung Ki

Kim Sung-Ki

Chairman, Korean Psoriasis Association

Bradley Price

Bradley Price

Director of Policy and Public Affairs, Action for Pulmonary Fibrosis

12.James

James Gordon

Head of Market Access and Healthcare Affairs, ASKAN

  • How the Rare Disease Regulatory Framework Benefits Patients? | Kim Sung-Ki

  • Generating Patient Experience Data to Address Unmet Needs of Pulmonary Fibrosis Patients | Bradley Price

  • Panel: Question & Answer moderated by James Gordon

  • Closing Remarks | Eleanor Tan & Bronwyn Lewis

Boehringer Ingelheim Regional ASKAN organized and provided funding for this non-promotional virtual forum, including speaker honoraria and presentation development support where applicable.

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