About us

European Neurofibromatosis Group (ENFG) factsheet

European Neurofibromatosis Group (ENFG) is a network in the European neurofibromatosis and schwannomatosis scene with an own identity, independent from other entities and/or institutions

It is a legal entity governed by Dutch public law having its official seat in Rotterdam, the Netherlands, and registered at the Dutch Chamber of Commerce under registration number 63770164

European Neurofibromatosis Group (ENFG) aims to:

  • share knowledge of NF
  • initiate research of NF and outreach to other research consortia relevant for NF
  • support young clinicians and scientists
  • connect with lay groups

Specific tasks are to:

  • support the scientific content of the European NF meeting
  • to make structured plan for collaborations (bigger cohorts, collective fund raising, etc.)
  • clinical and scientific board (for interaction with industry, case rounds etc.)

European Neurofibromatosis Group (ENFG) organization

Steering committee (rotating position for 4 yrs)

  • Chair
  • Secretary
  • Liaison with lay group
  • Liaison with European meeting
  • Liaison with other stakeholders (e.g. ERN GENTURIS, CCAB CTF Europe, research consortia)

Board

  • Steering committee
  • One representative of a lay group
  • One representative of each country
  • Webmaster for the ENFG website

Members
Health care professionals and researchers within the Neurofibromatosis and schwannomatosis scene, from European institutions. There are no limitations of borders, or membership to other entities.

We consider two type of members:

  • NFologist members: researchers or clinicians that are long term involved in NF patient care and/or research with scientific output, are involved in promoting NF health care and are ambassadors for NF to other stakeholders
  • General members: those who are due to their current position temporary involved in NF care or those who are collaborators in studies without the main focus on NF for an indefinite period

European Neurofibromatosis Group (ENFG) Board Meetings

Board meetings twice a year (virtual)
Steeringcommittee meets additionally 2x/yr (added to board meetings) (virtual)
General meeting (open for all members) once in 2 yrs (during European meeting), and optional during an international NF meeting (annually)

ENFG Research Club

The ENFG Research Club 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.
The Research Club will be scheduling one meeting session per quarter.

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