Roundtables

 

Roundtables, Wednesday 24 April 2024

Derek Ansel
Roundtables
14:15

Roundtable 01: Shifting strands: Operational challenges and ethical dilemmas of genetic testing

Panel discussion
Roundtables
14:15

Roundtable 02: Patient Recruitment for Neurodegenerative and Neuromuscular Clinical Trials

  • How to reach more patients: clinical trial agnostic and clinical trial specific approaches
  • How Patient Navigators play a crucial role in the patients’ CT journey
  • Understand how to involve all stakeholders through the use of platform
Jytte van Huijstee, Director Clinical Trial Operations, myTomorrows
Kim MacDonnell
Roundtables
14:15

Roundtable 03: Benefit or a threat? Beware the AI generated patient

Kim MacDonnell, Associate Director, Rare Disease, COE, Parexel
Panel discussion
Roundtables
14:15

Roundtable 05: Forecasting & business development: Sizing the market opportunity

Chelsea Catsburg, Engagement Manager, BluePrint Orphan
Joe Musumeci, President, BluePrint Orphan
Panel discussion
Roundtables
14:15

Roundtable 06: Meeting the challenges of fast-track approval for orphan drugs

Lauren Bylsma, Senior Epidemiologist, EpidStrategies, A Division of ToxStrategies
Jon Fryzek, Practice Director, EpidStrategies, A Division of ToxStrategies
Amy Kimzey, Toxicologist, EpidStrategies, A Division of ToxStrategies
Naomi Cohen Sacks, Vice President, HEORStrategies, A Division of ToxStrategies LLC
Joslyn Crowe
Roundtables
14:15

Roundtable 07: Impact of rare disease on siblings

Joslyn Crowe, Executive Director, National Niemann Pick Disease Foundation Inc
Wendy Borsari
Roundtables
14:15

Roundtable 08: PAG to Pharma - transitioning from the rare disease patient community to an advocacy role within industry

Rachel Harrison
Roundtables
14:15

Roundtable 09: Early access programs Q&A

Panel discussion
last published: 20/Apr/24 16:35

Roundtables, Thursday 25 April 2024

Gary Ho
Roundtables
13:45

Roundtable 01: Connecting journeys: Building an online community for support and insight

Raghu Vishwanath
Roundtables
13:45

Roundtable 02: Patient-engagement in a new digital world, from diagnostics to holistic care

Raghu Vishwanath, Global Head, Franchise Strategy and Operations, Rare Diseases Specialty Care, Sanofi
Panel discussion
Roundtables
13:45

Roundtable 03: RDCA-DAP task forces: How to facilitate drug development in rare disease?

Sophia Zilber, Board member, patient registry director, Cure Mito Foundation
Kasey Woleben, Founder, Cure Mito Foundation/Rare Village
Panel discussion
Roundtables
13:45

Roundtable 04: Evolving the value proposition toward equity for adults living with rare conditions

Louise Vetter, President & CEO, Huntington's Disease Society of America
Durhane Wong-Rieger, President, Chief Executive Officer & Chair, Canadian Organisation for Rare Disorder & Rare Diseases International
Panel discussion
Mary Morlino
Roundtables
13:45

Roundtable 06: Navigating the unknown - Undiagnosed, partial diagnosis, incorrect diagnosis

Michelle Davis
Roundtables
13:45

Roundtable 07: Income diversification for patient advocacy organizations

Lauren Kopsick
Roundtables
13:45

Roundtable 08: Health literacy & life skills training for an equitable world

Rodica Stan
Roundtables
13:45

Roundtable 10: PaVe-GT, AAV gene therapies

last published: 20/Apr/24 16:35

 

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