Global Network of Neurofibromatosis Patient Organisations

NF Awareness

Rare Disease Day – Let’s talk about NF

Rare Disease Day

Every year on the last day of February, we celebrate Rare Disease Day. 5% of the human population is affected by a rare disease. In Europe alone, 30 million people are affected by a rare condition. One of these rare diseases is Neurofibromatosis, which actually stands for a group of three rare diseases: Neurofibromatosis Type 1, Neurofibromatosis Type 2 and Schwannomatosis.

Like in all rare diseases, NF patients suffer from a lack of recognition in health care, research and sadly often also discrimination. Few patients find the strength to publicly speak up about their disease. A young woman from Cyprus bravely talks about her life with the Schwannomatosis. Please take the time to learn about the challenges of a living with the rare disease Schwannomatosis:

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