HI/EFAPH Joint Scientific Committee

Haemochromatosis International and the European Federation of Associations of Patients with Haemochromatosis are guided by a joint scientific advisory committee made up of eminent researchers and clinicians from around the world. 

There is a long track record of good interaction and collaboration between the scientific community and haemochromatosis patients’ associations, reflected not only in the regular participation of experts in their annual meetings and conferences, and in the participation of patients at the BioIron and European Iron Club Meetings, but also in the execution and promotion of patient oriented projects such as the publication and translation of the Therapeutic Guidelines, and the ongoing HARI project, on the study of hemochromatosis arthropathy.

There are also good interactions in science oriented projects where patients have been invited to participate, such as in the publication of the EMQN best practice guidelines for the molecular diagnosis of HH (Eur J Hum Genet, 2016;24:479-95), the EASL clinical practice guidelines for HFE hemochromatosis ( J Hepatol. 2022 77(2):479-502) as well as the recent update and recommendations of Hemochromatosis nomenclature and classification ( Blood. 2022 ;139(20):3018-3029).

The Chair of the Joint Scientific Committee is Professor Graça Porto. Current members are listed in the table below.

	Surname	Name	Country	Main expertise
Prof	Adams	Paul	Canada	Hepatology
Dr	Butzeck	Barbara	Germany	Patients’ representative (HARI project)
Dr	de Graaff	Barbara	Australia	Health Economics
Prof	Delatycki	Martin	Australia	Clinical Genetics
Dr	Distante	Sonia	Norway	Hepatology
Mr	Don	Howard	UK	Patients’ representative (President HI)
Prof	Evans	Rob	UK	Biochemistry Research
Dr	Finzel	Stephanie	Germany	Rheumatology
Prof	Girelli	Domenico	Italy	Internal medicine/Hematology
Prof	Guggenbuhl	Pascal	France	Rheumatology
Dr	Jia	Jidong	China	Hepatology
Dr	Kowdley	Kris	US	Hepatology
Dr	Loreal	Olivier	France	Biology Research
Prof	McLaren	Gordon	US	Hematology
Prof	Olynyk	John	Australia	Hepatology
Prof	Pietrangelo	Antonello	Italy	Internal medicine/Hepatology
Prof	Porto	Graça	Portugal	Hematology
Dr	Ryan	John	Ireland	Hepatology
Dr	Sanchez	Mayka	Spain	Molecular medicine
Prof	Santos	Paulo	Brazil	Clinical & molecular pathology
Dr	Shearman	Jeremy	UK	Hepatology
Prof	Subramaniam	Nathan	Australia	Molecular medicine
Prof	Swinkels	Dorine	Netherlands	Clinical & molecular pathology
Mr	Toska	Ketil	Norway	Patients’ representative (President EFAPH)
Prof	Zoller	Heinz	Austria	Hepatology