Frank Hennemann

Patient Expert

Frank has 48 years experience as a patient with a rare and deadly genetic disease called “Alpha1 Antrypsin Deficiency” (diagnosed at the age of 6 month). As a patient advocate he participated in numerous patient and rare disease events across Europe incl. such of e.g. Eurordis.


Frank also brings many years of experience as an employed and consulting patient-engagement manager for different pharma companies like Novartis, Takeda and Griffols in Germany and Switzerland and worked with the team of “Findmecure”in the UK.


He has been building and developing close cooperation with patient organizations across Europe in different indications. His experience covers donations and sponsoring, tracking and transparency guidelines and cooperation with the compliance departments of companies. He developed and was involved in care and awareness campaigns in co-creation processes together with patient organizations. Among many other programs he supported the projects „AlphaCare“ of Grifols and InTheirShoes of Takeda (IBD).