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
Patient Engagement Lead, ASKAN
Bronwyn Lewis
Head of Global Patient Engagement
Prof William Hwang
Senior Consultant, National Cancer Centre Singapore
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Welcome & Agenda | Eleanor Tan
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Opening Address | Bronwyn Lewis
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Patient Engagement in the Public Healthcare System | Prof William Hwang
Part A: Health Technology Assessment and Patient Involvement
Fiona Pearce
Senior Advisor, Agency for Care Effectiveness
Richard Vines
Co-Founder, Rare Cancers Australia
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Introduction to HTA and the Importance of Patient Engagement in HTA | Fiona Pearce
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Role of Rare Disease Organizations in Speeding up Access for Patients | Richard Vines
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Panel Session with HTA Patient Experts moderated by Bronwyn Lewis
Part B: Patient Organizations Supporting Healthcare Delivery
Janet Francisco-Kochis
Program Officer, Philippine Society of Orphan Disorders (PSOD)
Harry Patsamanis
General Manager - Consumer Programs and Partnerships, Lung Foundation Australia
Stef Cormack
Director of Services, Action for Pulmonary Fibrosis
Jaime Macedo
Cancer Navigation Program Lead, Rare Cancers Australia
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Gaps in Healthcare Delivery in Rare Diseases | Janet Francisco-Kochis
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Patient Organization-led Peer Connect and Nurse Care Programs | Harry Patsamanis
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Pulmonary Fibrosis Befriender Program | Stef Cormack
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Rare Cancer Australia (RCA) Patient Support Program | Jaime Macedo
Part C: Patient Organizations Involved in Policy
Kim Sung-Ki
Chairman, Korean Psoriasis Association
Bradley Price
Director of Policy and Public Affairs, Action for Pulmonary Fibrosis
James Gordon
Head of Market Access and Healthcare Affairs, ASKAN
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How the Rare Disease Regulatory Framework Benefits Patients? | Kim Sung-Ki
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Generating Patient Experience Data to Address Unmet Needs of Pulmonary Fibrosis Patients | Bradley Price
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Panel: Question & Answer moderated by James Gordon
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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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