magazine menu toggle icon magazine menu toggle icon



  • Magazine Global Network of Neurofibromatosis Patient Organisations
  • Interview with Gilles Atlan from NF2 BioSolutions Read more about the work of the vice president of NF2 BioSolutions
  • Vestibular schwannomas NF2 has many different symptoms. Find out more about this specific manifestation.
  • Research News Find out more about recent advances in the field of NF2 research
  • Upcoming events Have a look at what the NF Calendar of 2024 holds for you.
  • How to cope with... An affected person talks on how to deal with NF2-related hearing loss.
  • Dear readers,
    I’m happy to introduce the newest edition of the NFPU online magazine. For those of you who don’t know me yet, my Name is Karin Hoogendijk and I’m part of the Dutch NF Organisation NFVN. I am the new Chair of NFPU, so it’s my pleasure to be partly responsible for this online magazine. This time, the NFPU Team focuses on NF2-related Schwannomatosis. More specifically, we look at vestibular schwannomas, tumours on the hearing nerve that are a manifestation of NF2.

    In terms of mental health, for this edition we discuss how to deal with NF2-related gradual hearing loss and how to cope in everyday life. Many people with NF2 or other rare diseases have hearing problems and even become deaf over time. This can be very frustrating and some may even try to avoid social interactions because of it. We talked with an affected person (Joanne Ward) and asked her for strategies on how to best deal with this issue. Joanne Ward is also our Heroine of the month and shares her inspirational, personal story to encourage others living with similar symptoms of NF2.
    For the young ones, we have a Kids Corner that offers playful games and a children book from the Portuguese NF Organization APNF, called “The Adventures of Tito”, that explains NF in a children-appropriate way.
    And lastly, I want to thank you for supporting NFPU and this online magazine. If you like our work, you can give us a donation. Every small amount helps and through that, we have more resources to better support people battling with all types of NF!

    index cover image

    Karin Hoogendijk, Chair of NFPU

    • Interview with the vice president of NF2BioSolutions Read the interview with Gilles Atlan who talks about his NF2 organisation in the UK
      7475Interview with Gilles Atlan from NF2BioSolutions

      READING TIME 3 min. Interview

    • Kids Corner Find some online games for kids and a great children book about NF.
      7402Kids Corner

      READING TIME < 1 min. Article

    • Research News on NF2 Click here for the newest discoveries on NF2 and vestibular schwannomas
      7480Research News on NF2 and vestibular schwannomas

      READING TIME 4 min. Article

    • The NF Calendar 2024 What is happening in the NF world? Find out more about big events.
      7455Private: Upcoming events

      READING TIME 3 min. Article

    • Vestibular Schwannomas Find out more about this specific symptom.
      7395Vestibular schwannomas

      READING TIME 2 min. Article

    • Donations A small gesture with a big effect.

      READING TIME < 1 min. Information

    • Glossary If you don’t understand all the definitions, look them up here.

      READING TIME 2 min. Article


    How to cope with (NF2-related) hearing loss

    An affected person tells us how she dealt with her struggle of becoming deaf


    How to cope with (NF2-related) hearing loss

    An affected person tells us how she dealt with her struggle of becoming deaf