Global Network of Neurofibromatosis Patient Organisations

Sharing best practices

Open Meeting 2021

In 2021 NF Patients United held its annual meeting together with an open meeting for NF patients, relatives, caregivers and medical stuff. There we exchanged best practices from NF patients organisations, had talks from NF experts and provide information lectures about ongoing research projects on Neurofibromatosis.

Watch the inspiring activities for NF patients here:

Rehabilitation program for children with NF

Claas Röhl from the NF patients organisation NF Kinder talks about experience and learnings of the rehabilitation program customized for the needs of children with NF. It has been created with the help and support of NF Kinder at the Rehabilitation Center Kokon in Austria.

Young NF patients summit in April

Gillian Payne, leadership advocacy coordinator at the U.S. patient organisation Littlest Tumor Foundation shows the joint program with “NF Patients United”. The young NF patient summit for young adults with NF takes place in April every year.

Engaging patients and caregivers in clinical trials

Vanessa L. Merker, PhD, from Massachusetts General Hospital explains the REiNS patient representative program. The goal is to develope standardized treatments response criteria in patients with nf1, nf2 and schwannomatosis. This work is done together with NF patients all over the globe.

NF Leadership program

The NF Young Adult Leadership Programm is established by the “Littlest Tumor Foundation”, an NF patient organisation from the Unites States. In this video Tracy Wirtanen shows the approach and how they developed that project with volunteer support and how they encourage and strengthen young patients with NF.

Newly diagnosed with NF1 – Supporting Parents

Kym Winter is psychotherapist at rareminds and talks in this webinar at the “NF Patients United Annual Meeting & Best Practice 2021” about supporting parents of children with diagnosis of NF 1. Together with the British NF patient organisation Childhood Tumour Trust (CTT) they worked out support program. Watch their approach in this video.

The meeting spot – a web app for the NF community.

Managing the information of exams, medical appointments, reports and therpies can be quiete challenging when having a rare disease. For that the Portuguese patient organisation APNF developes a web app, which stores your medical data and information related to Neurofibromatosis. Watch the video from Theo Fernandez from APNF where he explains the app.

“I can say Neurofibromatosis” – A global awareness campaign

Claas Roehl from NF Patients United introduces the “I can say Neurofbromatosis” campaign to raise awareness for the rare diseases Neurofibromatosis 1, Neurofibromatosis 2 and Schwannomatosis. There everyone is invited to take part on social media – invitations to participate will be published in May.

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Here you find info from our previous meeting with international best practices for NF Patients: