Claas Röhl has studied communication science at the University of Vienna after graduating from an engineering school in Vienna. He specialized in advertising and public relations and worked in film production and B2B-marketing. After the diagnosis of his daughter with Neu-rofibromatosis Type 1, a rare genetic tumor risk syndrom, he began his path into patient advocacy. He founded the Austrian patient organization NF Kinder in December 2013. After completing several educational programs for patient representatives on a European level (such as the EUPATI patient expert training course, EURORDIS summer school & winter-school), and by continuously building a national and international network and investing in care and research infrastructures in Austria, NF Kinder managed to establish the first Austri-an center of expertise for Neurofibromatosis in Austria by forming a partnership with the Medical University of Vienna. On a European level Claas Röhl continued his ambition to create a better future for people living with Neurofibromatosis by co-founding NF Patients United, a European umbrella organization for NF patient organizations.