Full Program
RE(ACT) 2027
This program is subject to change without notice at any time.
Times are in CET.
Wednesday, March 10
Registration desk — 08:30–10:00
Opening speech — 10:00–10:30
Session A (10:30–13:30) — “Discovery, diagnosis, and disease understanding”
Chairs: Sally Ann Lynch, IE & Rima Nabbout, FR
- Sally Ann Lynch, IE
- Rima Nabbout, FR
- Stephen, Kingsmore, US
- Joris van Montfrans, NL
- Romain Alderweilrdt, BE « Gems-App: A Patient-Led Web-Based Dynamic Consent Platform For Genomic Data Altruism And Genome-Wide Epistasis Research In Marfan Syndrome and Other Rare Diseases »
Lunch break & Poster Sessions A & B — 13:30–14:30
Session B (14:30–17:30) — “Therapeutic modalities and translational science”
Chairs: Ana Hildago Simon, NL & Chantal Pichon, FR
- Ana Hildago Simon, NL
- Chantal Pichon, FR
- Francesco Muntoni, UK
- Jana Stoudemire, US
- Erik de Vrieze, NL « Unlocking the Inner Ear for Antisense Therapeutics: Lessons from DFNA9 »
- Gal Lazarus, IL « From Therapeutic Possibility to Trial Readiness: Building a Translational Pathway for ARID1B-Related Disorder »
Thursday, March 11
Session C (09:00–12:30) — “Clinical trials and evidence generation for small populations”
Chairs: Vinciane Pirard, BE & Viviana Giannuzzi, IT
- Vinciane Pirard, BE
- Viviana Giannuzzi, IT
- Yanis Mimouni, FR
- Alain Fisher, FR « Long-term efficacy of gene therapy for primary immunodeficiencies »
- Marjon Paasmooij, NL
Lunch break & Poster Sessions C & D — 12:30–14:00
Session D (14:00–17:30) — “Access, policy, and health systems”
Chairs: Dan O’Connor, UK & Anton Ussi, NL
- Dan O’Connor, UK » Advancing preventive therapeutic strategies as the next frontier in rare disease research and management »
- Anton Ussi, NL
- Piotr Kosla, PL
- Mary Wang, IT « Equitable Model of Care Coordination for Rare Diseases: An IRDiRC Task Force Framework »
- Trudy Nyakambangwe, ZW
Social event — 19:00–22:00
Friday, March 12
Session E (09:00–12:00) — “Care delivery and lived experience”
Chairs: Sharon Terry, US & Daniele Palumbo, IT
- Sharon Terry, US « From Lived Experience to Operating Authority: Building Rare Disease Systems Led by Communities »
- Daniele Palumbo, IT
- Fabienne Dobbels, BE
- Hélène Dollfus, FR – TBC
- Mariann Vegh, CH
Lunch break & Poster Sessions E & F — 12:00–13:30
Session F (13:30–17:00) — “ Data, platforms, and infrastructure”
Chairs: Tudor Groza, SG & Alberto Cámara Ballesteros, ES
- Tudor Groza, SG « AI vs. the Health System: Disruption, Partnership, or Transformation? »
- Alberto Cámara Ballesteros, ES
- Estelle Michael, BE « IRDIRC data registries task force presentation »
- Aled Edwards, CA
- Eric Olinger, BE – TBC
Program updated September 7, 2026.