Launch of the ENFG Research Club
We have decided to launch the ENFG Research Club ! It will provide an opportunity to bring together basic and clinical researchers around shared themes in order to: i) exchange perspectives and benefit from each other’s experience; and ii) accelerate potential collaborations. To this end, we propose to hold one session per quarter. Due to the […]
The 2026 European NF Conference – save the date
The 2026 European Neurofibromatosis Conference will take place in Vienna – Austria from 12 to 14 November 2026, at the elegant Hotel Andaz Vienna am Belvedere. Next year’s conference will focus on patient involvement in neurofibromatosis research and care, bringing together leading experts, clinicians, researchers, and patient representatives from across Europe and beyond. Organized in […]
Members list is now online
A list of ENFG members can now be found on this website here. If you are allready on the list, you can ask a private link to modify your personal data here. You can add yourself to the list here. Together we defeat NF Read more ….
ENFG meeting Paris
On April 4, 2025, the ENFG Day brought together clinical experts, researchers, patients, and their representatives at the Maison de la Dermatologie in Paris. This event helped strengthen European ties and opened the door to future collaborations. Together we defeat NF! Read more ….
Selumetinib authorized for use in EU
Plexiform neurofibromas (PNF) can cause disfigurement, pain and neurological deficits. For children with PNF that cannot be removed by surgery, there are no authorized treatment options. Selumetinib has been shown to be effective at shrinking PNF size in children aged 3 years and older. Although data on safety were limited, they indicate that the side […]
Let us know
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Paper on glioma-like-lesions in NF1
Physicians often encounter challenges in diagnosing non-optic intraparenchymal lesions on MRI brain scans of patients with neurofibromatosis type 1. Due to unclear incidence and evolution of these lesions into adulthood, we conducted a retrospective study on the subject. Our findings indicated that asymptomatic glioma-like lesions on MRI brain scans of neurofibromatosis type 1 patients, whether […]
Guidelines
NF guidelines can now be found on this website here. Current guidelines included on this page are:ERN GENTURIS – NF1GIST (ESMO–EURACAN–GENTURIS guideline 2022)Diagnostic criteria on NF1 and Legius (revised 2021)Tumour surveillance in NF1 (ERN GENTURIS guideline 2023) Please contact the webmaster, secretary or chair if you want to place another useful guideline on this website […]
Contact details
All ENFG steering committee members including email addresses can now be found on the members part of this website here (behind a password). Please contact the webmaster, secretary or chair if you don’t have the password.
ENFG meeting 2024
The people involved and/or interested in the European Neurofibromatosis Group (ENFG) had a meeting at the global NF conference in Brussels at the 23rd of June 2024. Around 50 people attended this meeting under the chairmanship of Rianne Oostenbrink. Brainstorming took place about the future of the ENFG and what the ENFG can mean for […]