INDEX
Magazine
Global Network of Neurofibromatosis Patient Organisations
Dear NF Community,
As the holiday season approaches, we’re delighted to share our latest updates before we all take a well-deserved winter break! Looking ahead to 2026, our member organizations have planned an exciting lineup of events and insightful talks focused on advancing the treatment of Neurofibromatosis. You can find all upcoming activities in the NFPU Calendar.
In this edition, we shine a spotlight on Malignant Peripheral Nerve Sheath Tumours (MPNSTs) in NF1 and other tumours associated with NF1 that have a risk of becoming malignant. We had the privilege of interviewing Dr. Ignacio Blanco, a renowned Spanish clinical geneticist, who provided deep insights into the development of MPNSTs. Additionally, we’ve gathered some interesting new research who look at promising treatment approaches.
Our Hero of the Month, João Silva, is a remarkable person with NF2-related Schwannomatosis who continues to lead his life with humour and optimism. His story is sure to inspire and give strength to many in the NF community.
We’re also featuring AESNF in this edition, our dedicated member organization in Spain. Dedicated member Wara speaks about the inspiring work of AESNF in supporting Spanish patients with NF1, NF2-related Schwannomatosis and Schwannomatosis, along with the many engaging events that unite their community throughout the year.
Finally, we want to thank you for your continued support of NF Patients United and this magazine. As Christmas is a season of giving, we invite you to make a donation to help us continue empowering people affected by all forms of Neurofibromatosis. Every contribution, no matter the amount, makes a difference!
With gratitude and warm wishes,
The NFPU Team
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