INDEX
Magazine
Global Network of Neurofibromatosis Patient Organisations
Dear NF community,
I am happy to introduce this special edition of the NFPU online magazine. May is NF Awareness Month which makes this edition particularly relevant as it keeps you updated on all the NF campaigns and events that are happening around Europe. Read more to find out when the next NF Academy is taking place and what happened at the NF Best Practice Summit in Barcelona.
The focus of this magazine lays on Schwannomatosis, the least common form of Neurofibromatosis. We take a closer look at Schwannomatosis symptoms, such as chronic pain, and provide you with an overview about treatment methods.
The NFPU team also had the honor of speaking with Kimberly Ostrow, PhD, a renowned assistant professor in the Neurology Department at Johns Hopkins Hospital in Baltimore, USA. She works at the Comprehensive NF Center and researches the causes of pain in Schwannomatosis patients, with the goal of developing targeted treatments. Click here to learn more.
On the topic of mental health, we interviewed the psychologist Daniel Muñoz from Spain who was also present at the NF Best Practice Panel Discussion in Barcelona. We asked him about Schwannomatosis pain management and how to cope with a chronic disease.
Of course, we also highlight people with Neurofibromatosis who inspire us. This time, our Heroine of the month is Melpo Pittara, an NFPU advocate living with Schwannomatosis. Having this form of Neurofibromatosis caused her to have chronic pain, but she doesn’t let that affect her. Read more about her inspiring story!
Finally, I want to thank you for supporting NF Patients United and this online magazine. If you enjoy our work, we would greatly appreciate your donations. Every small amount counts, so we can have more resources to better support people battling with all types of NF and continue to improve this online magazine!
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