Full Program
RE(ACT) CONGRESS 2020:
*This program is subject to change without notice at any time*
WEDNESDAY, MARCH 11th
Session A, 13h30 to 17h30
Workshop 1 (2h): “Methodologies to assess the effect of diagnosis and therapies on RD patients”
- David Pearce, USA – Welcome & explanation of WG3
- John Belmont – Physicians Perspective
- Emily Griese – Population Health in healthcare: What does that mean for rare diseases?
- Alicia Basuskis – Measures to evaluate appropriate diagnosis on impact of diagnosis
- Patrizio Armeni – Evaluating impact of health benefits
- Daniel Ollendorf, USA “The Economics of Rare Disease: Value Assessment Challenges, Evidence Considerations, and Special-Case Status”
- Vicki Seyfert-Margolis – Rare disease real-world implementation of solutions in diagnostics
Workshop 2 (1h30): “The orphan drug development guidebook – Galaxy Guide”
Virgine Hivert and Diego Ardigò
POSTER SESSION A 17h30 to 18h30
Public Opening Ceremony 18h30 to 20
Welcome messages (from BLACKSWAN Foundation, European Joint Program Rare Disease and IRDiRC)
Alexandre Reymond, Director of the Center for Integrative Genomics and president of the executive board of the European Society of Human Genetics, CH “Genome architecture and diseases: the 16p11.2 paradigm”
THURSDAY, MARCH 12th
Session B, 9 to 12, “Diagnostic, WGS, artificial intelligence, new technologies”
- Mark Caulfield, UK
- Tudor Groza, AUS “Patient-driven self-phenotyping for precision health”
- Yaron Gurovich, USA “Next-Generation Phenotyping Using DeepGestalt in Clinic, Research and Variant Analysis”
- Anna Wedell, SE “Precision Diagnostics of Rare Diseases at the Genomic Medicine Center Karolinska”
- Julian Isla Gomez, ES – tbc
LUNCH & POSTER SESSION B & C 12 to 13:30
Session C, 13:30 to 17, “Advanced therapies: gene editing, cell therapy“
- Alessandro Aiuti, IT
- Hans-Dieter Volk, DE “Immunological challenges in gene therapy”
- Nathalie Cartier-Lacave, FR
- Frank Baas, NL – tbc
- Hildegard Büning, DE – tbc
FRIDAY, MARCH 13th
Session D, 9 to 12, “Molecular etiology of RD, innovative clinical trials, precision medicine”
- PJ Brooks, USA “Beyond “one disease at a time” so no disease is left behind: “Platform approaches to clinical trials in rare diseases”
- Terence Beghyn, FR
- Gisou van der Goot, CH
- Jean-François Deleuze, FR – tbc
- Kristina Larsson, NL – tbc
LUNCH & POSTER SESSION D, E & F 12 to 13:30
Session E, 13:30 to 17, “Access to diagnostic and drugs for all”
- Susanne Weissbaecker, SG “Taking action for Rare Diseases. If we don’t, who will?”
- Benjamin Djoudalbaye, ET
- Durhane Wong-Rieger, CAN
- William Gahl, USA
- Mengchun Gong, CN “Informatics Innovation in NRDRS: providing Systemic Support to Orphan Drug Development in China”
SATURDAY, MARCH 14th
Session F, 9 to 12, “Patient engagement in drug development and clinical trial”
- Nicola Bedlington, BE
- François Houÿez, FR “Engaging Patients: The EuroCAB Programme”
- Ritu Jain, SG
- Dimitrios Athanasiou, GR
- Nick Sireau, UK “How patients can lead drug development: the case of the AKU Society”
Program updated November 12, 2019
