Find the conference agenda below. Any updates to the schedule will be published here:
NF Best Practice Summit – on May 3rd, 2025
| TIME (CET – Barcelona) | TOPIC |
|---|---|
Introduction | |
| 9:30 – 10:00 | Welcome and opening – by NF Patients United & ACNefi |
Clinical aspects | |
| – Parallel Session A *NF1* | |
| 10:00 – 10:30 | Keynote speech “The role of genetic testing in NF1 throughout the years” – by Eric Legius |
| 10:30 – 10:50 | How clinical management of plexiform Neurofibromas in paediatric patients has been changed with MEK inhibitors – by Amedeo Azizi |
| 10:50 – 11:10 | Transition of care in NF1 and what is crucial in clinical management of adults with NF1 – by Ignacio Blanco |
| 11:10 – 11:20 | BREAK |
| 11:20 – 11:50 | Panel discussion with Eric Legius, PhD student, Ignacio Blanco |
| – Parallel Session B *NF2 related and non-NF2 related Schwannomatosis* | |
| 10:00 – 10:05 | Introduction – by Vera Lipovskaya |
| 10:05 – 10:20 | Understanding the experience of patients with NF2 and Schwannomatosis in Spain and Italy – by Irina Efimenko (Semantic Hub) |
| 10:20 – 10:50 | Latest developments in the field of NF2 – by Gilles Atlan (NF2 Biosolution – U.K.) |
| 10:50 – 11:05 | Using Explainable AI (XAI) system to assist the diagnosis and management of Schwannomatosis by Melpo Pittara (NF Patients United) |
| 11:05 – 11:15 | From exclusion to opportunity: the fight for inclusion in the workplace – by Valdemir S. Reis (APNF – Portugal) |
| 11:15 – 11:30 | Non-invasive therapy for children with NF2 – by Erik Hensen (Leiden UMC) and Annemijn Tops (Leiden UMC) |
| 11:30 – 11:50 | Closing remarks & BREAK |
Special Announcement | |
| 11:50 – 12:00 | Surprise moment of the NFPU conference |
| 12:00 – 12:25 | BREAK |
NF Best Practices & Future Directions | |
| 12:25 – 12:30 | Welcome word by Karin Hoogendijk |
| 12:30 – 12:45 | A new format for a meeting with patients and family – by Andreu Coy (ACNefi – Spain) |
| 12:45 – 13:00 | NF Academy: Beyond the young NF ambassador training: Turning Knowledge into Advocacy and Impact – by Cathie Milner (NF Ireland) |
| 13:00 – 13:10 | From exclusion to opportunity: the fight for inclusion in the workplace – by Valdemir S. Reis (APNF – Portugal) |
| 13:10 – 13:25 | Supporting Portuguese NF patients in their journey – Ana Elisabete Pires & Joana Grilo (APNF Portugal) |
| 13:25 – 13:30 | BREAK |
| 13:30 – 13:45 | Mental Wellbeing Partnership Network – by Matt Boltz Johnson EURORDIS) |
| 13:45 – 14:00 | The First NF Community Advisory Board – by Vera Lipovskaya (NF Patients United) |
| 14:00 – 14:15 | Improving access and quality of care through collaborations with health care providers – by Claas Roehl (NF Kinder – Austria) |
| 14:15 – 14:30 | NFCC’s Practices in patient support and charitable clinics, update – by Deanna Chen (NFCC – China) |
| 14:30 – 14:40 | BREAK |
NF Gene therapy | |
| 14:40 – 15:10 | NF Gene therapy: How do different gene therapy approach? And current gene therapy research – by Robert Kesterson |
Closing Keynote | |
| 15:10 – 15:40 | Embrace, the 4 steps of confidence – by Amit Ghose |
Summary and Reflections | |
| 15:40 – 15:55 | Wrap-Up & Farewell – by Claas Roehl, Vera Lipovskaya and Karin Hoogendijk |
There will be the option to ask your questions to the speakers at the end of each talk.
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Speakers of the NF Best Practice Summit
The NF Best Practice Summit is kindly supported by:
