ERN GENTURIS conference 2025
The ERN GENTURIS online conference 2025 was held on Thursday 20 March 2025 and was a great success! Videos of the conference presentations are available in the table below by clicking on the title of the presentation you want to view (requires a brief registration).
The conference flyer, including QR-codes linking to this page, is available here.
The conference featured updates on the ERN GENTURIS new guidelines, patient's concerns, research, new treatments and the future of hereditary cancer.
A printable pdf version of the programme is available here.
09:00 - 10:15 CET : NEW GUIDELINES
Moderator: Verena Steinke-Lange
|
Time |
Speaker |
Title |
| 09:00 - 09:05 | Mateja Krajc | Opening of the conference |
| 09:05 - 09:25 | Chrystelle Colas | Constitutional Mismatch Repair Deficiency (CMMRD) |
| 09:25 - 09:45 | Marianne Geilswijk | Birt-Hogg-Dubé syndrome |
| 09:45 - 10:05 | Rianne Oostenbrink | Neurofibromatosis type 1 |
| 10:05 - 10:15 | All session speakers | Discussion |
10:15 - 10:20 CET : SHORT BREAK
10:20 - 11:30 CET : PATIENT'S CONCERNS
Moderator: Claas Röhl
|
Time |
Speaker |
Title |
| 10:20 - 10:40 | Anke Oerlemans | Family planning, Newborn screening /Ethical issues |
| 10:40 - 11:00 | Rolf Sijmons | ERN Registry (the latest progression and patient portal) |
| 11:00 - 11:20 | Matt Bolz-Johnson | Mental Health (how do rare conditions impact family and social relationships?) |
| 11:20 - 11:30 | All session speakers | Discussion |
11:30 - 12:40 CET : LUNCH BREAK
12:40 - 14:30 CET : RESEARCH
Moderator: Karin Wadt
|
Time |
Speaker |
Title |
| 12:40 - 13:00 | Richarda de Voer | Solve-RD - solving the unsolved rare diseases |
| 13:00 - 13:20 | Carla Oliveira | PREVENTABLE project: sustainable care for rare tumour risk syndromes |
| 13:20 - 13:40 | Jolanda de Vries | Harnessing the Immune System to Prevent Lynch Syndrome-Associated Cancers: Promising Results with Dendritic Cell Vaccination Targeting Frameshift Mutations. |
| 13:40 - 14:00 | Lise Borgwardt | What’s new in imaging: total body PET/CT and its potential role for cancer predisposition surveillance |
| 14:00 - 14:20 | Verena Steinke-Lange | Evolution of liquid biopsy methods for colorectal cancer screening |
| 14:20 - 14:30 | All session speakers | Discussion |
14:30 - 14:35 CET : SHORT BREAK
14:35 - 16:05 CET : NEW TREATMENTS
Moderator: Svetlana Bajalica Lagercrantz
|
Time |
Speaker |
Title |
| 14:35 - 14:55 | Marjolijn Ligtenberg | Molecular cancer profiles open the way to personalized treatment options for patients with a BRCA1/2 pathogenic variant |
| 14:55 - 15:15 | Judith Balmaña | PARPi – indications and mainstreaming |
| 15:15 - 15:35 | Antonella Cacchione | NF1 and new treatments |
| 15:35 - 15:55 | Eamonn Maher | VHL and inherited renal cancer syndromes and new treatments |
| 15:55 - 16:05 | All session speakers | Discussion |
16:05 - 16:10 CET : SHORT BREAK
16:10 - 17:00 CET : THE FUTURE OF HEREDITARY CANCER
Moderator: Tiina Kahre
|
Time |
Speaker |
Title |
| 16:10 - 16:40 | Svetlana Bajalica Lagercrantz | Future perspectives in the era of mainstream testing |
| 16:40 - 17:00 | Nicoline Hoogerbrugge | The past and the future of ERN GENTURIS |
17:00 CET : END OF CONFERENCE
Mateja Krajc (Institute of Oncology Ljubljana, Slovenia)
Svetlana Bajalica Lagercrantz (Karolinska University Hospital, Sweden)
Verena Steinke-Lange (Medizinisch Genetisches Zentrum, Germany)
Karin Wadt (Rigshospitalet Copenhagen, Denmark)
Tiina Kahre (Tartu University Hospital, Estonia)
Claas Röhl (NF Kinder, Austria)
Jurriaan Hölzenspies (Radboud university medical center, Nijmegen)