In January 2023, the ERN Genturis tumour surveillance guidelines for people with Neurofibromatosis type 1 were released. We congratulate our colleague Vera Verbin (Lipkovskaya) who took part in this work along with other patient representatives. The guidelines are the result of the consensus of European experts in Neurofibromatosis type 1 - a rare genetic disease that affects over 200,000 people in Europe. This condition may cause the growth of tumours on the nerves anywhere in the body and have severe implications. The official article is available here: [https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(22)00547-8/fulltext](https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(22)00547-8/fulltext)