Description
Neurofibromatosis type 1 (NF1) and Schwannomatosis (SWN) are genetic diseases with severe clinical manifestations, greatly impacting the quality of life of affected individuals, including the development of benign and malignant nervous system tumors. Despite being rare, about 1 in 2500 people worldwide are afflicted by these diseases. The diverse clinical presentations and the complexity of certain traits require a multidisciplinary approach, not only for patient management, but also for research, which is crucial to develop novel potential therapeutic approaches.
The primary challenge that INTERACT-NF aims to address is the coordination of collaborative efforts among a critical mass of clinical, translational, and basic researchers and affected individuals and families, alongside other stakeholders like industry and policy makers. In addition to building a strong research community on NF1 and SWN and developing a collaborative research agenda, this action seeks to: harmonize NF1-SWN data and sample collection; reduce disparities in NF1-SWN research and innovation; foster multidisciplinary research on complex manifestations; strengthen basic and translational NF1-SWN research capacities; and enhance the visibility of NF1-SWN research.
INTERACT-NF is composed of clinical, translational and basic researchers in NF1 and SWN, comprising a wide range of disciplines and expertise, together with patient associations. INTERACT-NF promotes the active involvement of young researchers and innovators (YRIs), researchers from Inclusiveness Target Countries (ITC) and patient associations, while assuring gender balance. INTERACT-NF represents the most ambitious European initiative on NF1-SWN to date, concerning number and diversity of European countries involved, and the multidisciplinary natures of participants.
Action keywords
Neurofibromatosis - Schwannomatosis - genetic disease - interdisciplinary - network
Management Committee
| Country | MC Member |
|---|---|
| No records found | |
Main Contacts
Action Contacts
COST Staff
Working Groups
| Number | Title | Leader |
|---|---|---|
| 1 | Clinical | TBA |
| 2 | Translational | TBA |
| 3 | Basic Research | TBA |
| 4 | Communication, Exploitation and Dissemination | TBA |
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