35 Years With NF
Minna Pöyhönen, MD, PhD, Professor, Clinical Geneticist, Helsinki University and University Hospital Helsinki Finland
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I started my NF research at the end of 1980s as a young resident of clinical genetics. It was excellent timing because there were also at that time several outstanding NF groups around the world, also in Europe. Interestingly, also several national and international patient groups in NF1 and NF2-related schwannomatosis played already an important role in NF field. In Finland, I was lucky because Juha and Sirkku Peltonen have already had an excellent NF research group for several years.
I did my PhD in NF at Northern Finland (population-based study) having as a role model both Susan Huson and Birgitta Rembeck and their impressive clinical work with NF. I have been fortunate to collaborate and learn from the best NF researchers around the world for many years. I would specifically mention Meena Upadhaya and late Ludwine Messiaen who both have always had time to discuss and answer my many questions. In Finland with Juha and Sirkku our common research highlight has been the Finnish NF register. It was important, but time-consuming work to verify NF diagnoses from patient records and autopsy reports. As a result, we were able to confirm a total of about 1500 NF patients in Finland (population about 5.4 million).
I am so pleased that we have NF Europe and also European Reference Network (ERN) rare Genetic Tumour Risk Syndromes (GENTURIS). I am sure that with a strong European collaboration, we can have productive international and national NF-collaboration which all NF-patients and families will benefit.
