INDEX
Magazine
Global Network of Neurofibromatosis Patient Organisations
Dear NF community,
I am thrilled to introduce another edition of the NFPU online magazine, just in time for the Rare Diseases Day on the 28th of February. Apart from that, our main focus this time are NF-related cardiovascular symptoms! Do you have high blood pressure? Or do you have prominent veins showing? We look at these manifestations more closely and provide you with a clear overview.
The NFPU team also had the honor of speaking with Prof. Dr. med. Constantin Roder, senior doctor at the Clinic for Neurosurgery and Moyamoya in Tübingen, Germany. He shared interesting insights into his work with the rare Moyamoya disease and available treatment options.
On the topic of mental health, we interviewed psychotherapist Kym Winter from the UK Council for Psychotherapy. With over 20 years of experience consulting for people with rare diseases and health care professionals, she offers valuable advice on mental health struggles.
Of course, we also look for people with Neurofibromatosis who inspire us. This time, our Hero of the month is Amit Ghose, a well-known NF speaker and activist. Having Neurofibromatosis Type 1 changed his appearance from a young age on but he didn’t let that stop him. Read more about his 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 make this online magazine better!
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