INDEX
Magazine
Global Network of Neurofibromatosis Patient Organisations
Dear readers,
It is my great pleasure to introduce to you this newly-created NFPU online magazine. With this magazine, I want to create an opportunity to share new research, talk about upcoming events and engage in mental health topics. My goal is to educate all NFPU communities in the best way possible, so they have more resources to fight this genetic disease. I also want to give those affected regular updates on the research about NF, as I am full of hope that one day scientists will find a cure.
In this first edition, we focus on the unpredictability of the disease and how to properly deal with it. All types of Neurofibromatosis progress differently, so it is difficult to say how it will affect a patient over time. This unpredictability is very challenging for not only the patient but also his surroundings, meaning family and friends. For this edition, our team talked with the Dutch child psychiatrist Dr. Andre Rietman who wrote his PhD on NF1. We spoke on how to deal with the disease, how to manage the insecurity revolving around it and how much room to give it in your everyday life.
Furthermore, every edition of the magazine will focus on one specific symptom of all types of Neurofibromatosis. In this edition, we discuss the effects of neurofibromas and specifically plexiform neurofibromas (benign tumours that grow from nerve cells and are found on patients with NF1). The Hero of the Month is Philip Moss, who was also diagnosed with a plexiform neurofibroma at the age of 8. Despite his disease, he manages to lead a relatively normal life, thanks to a new drug that he has been taking. If you want to read about him, click here.
And lastly, I personally want to thank you for your engagement and for subscribing to our magazine. It’s my goal to create a regular interactive exchange with you, therefore I would like you to give me feedback for every edition! Thank you for your support.
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