Global Network of Neurofibromatosis Patient Organisations


Our support for patients with Neurofibromatosis

We carry out projects to support patients with NF in all countries. At our annual meeting we showed best practice examples, presented from the national member organisations at the NFPU event in December 2020.
Watch the videos here:


Rianne Oostenbrink – Pediatriction at the Erasmus MC Rotterdam –
talks about the Innovative Patient Centric Clinical Trial Platforms. NFPU is associated partner at the research project EU PEARL:

Clinical Guidlines for NF

Matt Boltz Johnson from ERN GENTURIS talks about the developement of the NF1 Tumour Management Guideline:

Direct help for a young NF patient from Greece

Eirene Poupaki from the NF patient organisation in Greece talks about help for a young boy from Greece, who got support by a NFPU member organisation in another country. Watch her case description from Yorgos, a 2-year old boy from Greece:

NF Young Patients Academy 2020

Melpo Pittara from the new NF patient organisation in Cyprus talks about the NF young patients academy. The ambassador training has been conducted by NF Patients United last summer 2020. See the presentation of the NF Academy here:

The next patient academy is planned for 2021, taking place in Vienna. Find more infos here.

COVID-19 Support by NF patients

In this presentation Claas Roehl from NF Kinder talks about the impact of COVID-19 on rare disease patients – and additionally how NF Patient United provided entertainment in the Corona period:

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