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  • Magazine Global Network of Neurofibromatosis Patient Organisations
  • How to cope with the unpredictability of NF Dealing with the disease and the uncertainty can be very stressful and make it hard for a person with NF to have a positive outlook on life, so here are ways on how to cope with it.
  • Hero of the Month Let's meet Philip Moss and hear about his story with NF1 and plexiform neurifobromas.
  • Plexiform Neurofibromas NF comes in all forms and shapes and looks different on everybody. Let's look at this specific symptom.
  • Projects in Progress NFPU Best Practice goes into its third round. Register now to participate.
  • 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, I want to focus on the unpredictability of the disease and how to properly deal with it. All types of Neurofibromatosis come in different forms and progress differently on anybody, 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. Every doctor’s appointment might bring bad news and that makes all those affected feel very anxious. For this edition, our team talked with the Dutch child psychiatrist Dr. Andre Rietman who wrote his PhD on NF1. We spoke with him on how to deal with the disease, how to manage the insecurity revolving around it and how much room to give to it in your everyday life.
    Furthermore, every edition of the magazine will focus on one specific symptom of all types of Neurofibromatosis. In this case, I want to 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 neurofibromas at the age of 8. Despite his disease, he managed 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.

    index cover image

    Claas Roehl, Chair of NF Patients United

    • Plexiform Neurofibromas Learn more about this NF1 symptom.
      6703Plexiform Neurofibromas

      READING TIME 2 min. Article

    • Research News What has science done?
      6707Research News

      READING TIME 2 min. Research

    • Interview with NF researcher Dr. Gross Andrea Gross talks about her research on plexiform neurofibromas.
      6847Research on plexiform neurofibromas

      READING TIME 6 min. Interview

    • Upcoming Projects Find out about NF Best Practice and many more events
      6716Projects in Progress

      READING TIME 4 min. Article

    • Hero of the Month Philip's story
      6683Hero of the Month

      READING TIME 3 min. Article

    • How to cope with the unpredictability of NF
      6694How to cope with the unpredictability of NF

      READING TIME 2 min. Article

    • Mental health A neuropsychologist gives advice on how to deal with the insecurity revolving the disease.
      6840Interview with NF psychologist André Rietman

      READING TIME 5 min. Interview

    • Kids Corner Games for the young ones.
      6728Kids Corner

      READING TIME < 1 min. Games

    • Donations A small gesture with a big effect.

      READING TIME < 1 min. Information

    • Glossary If you don't understand some technical terms, look them up here.

      READING TIME 2 min. Information


    Plexiform Neurofibromas

    The rare genetic disease Neurofibromatosis comes in all shapes and froms and progresses differently on everybody.


    Plexiform Neurofibromas

    The rare genetic disease Neurofibromatosis comes in all shapes and froms and progresses differently on everybody.