INDEX
Magazine
Global Network of Neurofibromatosis Patient Organisations
Dear NF Community,
We are happy to share our first NFPU online magazine in 2026! In the new year, our member organisations and the worldwide NF community have planned exciting events such as the upcoming Rare Diseases Day next week, the American NF Conference in June and the European NF Conference in November. You can find all upcoming activities in the NFPU Calendar.
In this edition, we take a closer look at Meningiomas, a primary brain tumour common in individuals with NF2-related Schwannomatosis. We had the privilege of talking to Clare Goddard from NF2BioSolutions, who provided deep insights into the work they do for people with NF2-related Schwannomatosis. Additionally, we’ve looked at some interesting new research and at promising treatment approaches.
Our Hero of the Month, Valdemir from Portugal, is a remarkable person with NF2-related Schwannomatosis who continues to lead his life with humour and optimism. His words are sure to inspire and give strength to many in the NF community.
We are also featuring Stowarzyszenie Neurofibromatozy Polska in this edition, our new member organization in Poland. Dedicated patient advocate Adam Szargut speaks about their work in supporting patients with NF1, NF2-Schwannomatosis and Schwannomatosis in Poland.
Finally, we want to say a big Thank You for your continued support of NF Patients United and this magazine. Before Rare Diseases Day, we invite you to make a donation to help us continue helping people affected by all forms of Neurofibromatosis. Every contribution, no matter how small, makes a difference!
With gratitude and warm wishes,
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