Full Program
RE(ACT) Congress & IRDiRC Conference 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, USA – Physicians Perspective
- Emily Griese, USA – Population Health in healthcare: What does that mean for rare diseases?
- Alicia Basuskis, AUS – Measures to evaluate appropriate diagnosis on impact of diagnosis
- Patrizio Armeni – IT 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, USA
Workshop 2 (1h30): “The orphan drug development guidebook – Galaxy Guide”
POSTER SESSION A 17h30 to 18h30
Public Opening Ceremony 18h30 to 20
Welcome messages
Olivier Menzel – Chairman and founder BLACKSWAN Foundation, founder RE(ACT) Congress
Lucia Monaco – Chair, IRDiRC Consortium Assembly
Daria Julkowska – Coordinator. European Joint Program Rare Disease
Keynote presentation: 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 “The 100,000 Genomes Project Transforming Healthcare”
- Tudor Groza, AUS “Patient-driven self-phenotyping for precision health”
- Yaron Gurovich, USA “Next-Generation Phenotyping Using DeepGestalt in Clinic, Research and Variant Analysis”
- Christoffer Nellåker, UK “Deep phenotyping from faces and the Minerva Initiative”
- Donatello Crocetta, CH
LUNCH & POSTER SESSION B & C 12 to 13:30
Session C, 13:30 to 17, “Advanced therapies: gene editing, cell therapy” Chairman: Joseph Scheeren
- Joseph Scheeren, USA
- Alessandro Aiuti, IT
- Hans-Dieter Volk, DE “Immunological challenges in gene therapy”
- Nathalie Cartier-Lacave, FR
- Thimoty Yu, USA – tbc
FRIDAY, MARCH 13th
Session D, 9 to 12, “Molecular etiology of RD, innovative clinical trials, precision medicine” Chairman: PJ Brooks
- PJ Brooks, USA “Beyond “one disease at a time” so no disease is left behind: “Platform approaches to clinical trials in rare diseases”
- Anna Wedell, SE “Precision Diagnostics of Rare Diseases at the Genomic Medicine Center Karolinska”
- Terence Beghyn, FR
- Gisou van der Goot, CH
LUNCH & POSTER SESSION D, E & F 12 to 13:30
Session E, 13:30 to 17, “Access to diagnostic and drugs for all” Chairman: William Gahl
- Susanne Weissbaecker, SG “Taking action for Rare Diseases. If we don’t, who will?”
- Benjamin Djoudalbaye, ET “Access to diagnostic and drugs for all in the African context”
- 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”
- François Houÿez, FR “Engaging Patients: The EuroCAB Programme”
- Dimitrios Athanasiou, GR
- Nick Sireau, UK “How patients can lead drug development: the case of the AKU Society”
- Nicola Bedlington, BE “Towards a sustainable patient engagement ecosystem”
Program updated January 17, 2020
