EFAPH/HI Joint Scientific Committee

The European Federation of Associations of Patients with Haemochromatosis and Haemochromatosis International 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 EASL clinical practice guidelines for HFE hemochromatosis, J Hepatol, 2010; 53:3-22,  and the EMQN best practice guidelines for the molecular diagnosis of HH, Eur J Hum Genet, 2016;24:479-95), as well as the ongoing project on the Hemochromatosis nomenclature initiated within International BioIron Society activities.  

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

SurnameNameCountryMain expertise
ProfAdamsPaul CanadaHepatology
DrButzeckBarbaraGermanyPatients’ representative (HARI project)
Drde GraaffBarbaraAustraliaHealth Economics
ProfDelatyckiMartin AustraliaClinical Genetics
DrDistanteSoniaNorwayHepatology
ProfEvansRobUKBiochemistry Research
DrFinzelStephanie GermanyRheumatology
ProfGirelliDomenicoItalyInternal medicine/Hematology
ProfGuggenbuhlPascal FranceRheumatology
DrJiaJidong ChinaHepatology
DrKowdleyKrisUSHepatology
DrLorealOlivierFranceBiology Research
ProfMcLarenGordonUSHematology
ProfOlynykJohnAustraliaHepatology
ProfPietrangeloAntonelloItalyInternal medicine/Hepatology
ProfPortoGraçaPortugalHematology
DrPrinceDianneAustraliaPatients’ representative (President HI)
DrRyanJohnIrelandHepatology
DrSanchezMaykaSpainMolecular medicine
ProfSantosPauloBrazilClinical & molecular pathology
ProfSubramaniamNathan AustraliaMolecular medicine
ProfSwinkelsDorineNetherlandsClinical & molecular pathology
ToskaKetilNorwayPatients’ representative (President EFAPH)
ProfZollerHeinz AustriaHepatology