NF Patients United is delighted to announce the establishment of the Community Advisory Board (CAB) for Neurofibromatosis 1, led by NF Patients United.
The establishment of the CAB
The CAB brings together NF1 patients and caregivers from across Europe to foster meaningful dialogue, share experiences, and provide valuable insights into the challenges faced by our community. CAB will work closely with the pharmaceutical industry, researchers, academics, government, policy makers and other stakeholders to advocate for the best possible research and access to treatment for patients.
Through collaboration and exchange, the CAB works to:
- Address key issues that NF patients / caregivers face
- Provide input on research, policies, and programs
- Foster partnerships between patients / caregivers, healthcare professionals, and policymakers
Publication of CAB NF1 Meeting Reports
We are pleased to share the reports from the recent Community Advisory Board meetings on Neurofibromatosis Type 1 (NF1 CAB) held in December 2025.
During these sessions, NF1 CAB members engaged in talks with Alexion Pharmaceuticals and SpringWorks Therapeutics, providing valuable patient-driven insights on key aspects of NF1 care, research, and unmet needs.
These exchanges are essential to ensure that patient perspectives are meaningfully integrated into decision-making processes and the development of future solutions.
We invite you to explore the full reports to learn more about the discussions and key takeaways from these meetings.
Getting involved in the CAB for NF1
You are a patient with NF1:
If you are interested to get involved in the NF1 Community Advisory Board and the educational training as a member please contact us at nf1-CAB@nf-patients.eu
Company participation:
For companies who would like to contribute to the development of research and medicine for the rare disease Neurofibromatosis and would like to use the board of NF experts to advance their strategies, please contact: nf1-CAB@nf-patients.eu
We are happy to hear from you!
Information updates on CAB activities will be published regularly!
Our Sponsors
This important initiative is made possible through the generous support of our sponsors:
Leading Founding Sponsor:
We extend our heartfelt thanks to Alexion Pharmaceuticals, Inc. for their significant contribution and unwavering commitment to empowering patient voices.
Leading Founding Sponsor:
We are grateful to SpringWorks Therapeutics, Inc. for their support in helping us realize the vision of a patient-driven advisory board.
Together, with the support of our sponsors, the NF Community Advisory Board will pave the way for a more inclusive and patient-centered healthcare landscape.
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