2023: “We present the results of the first worldwide survey conducted in nearly
1500 HC respondents, in which we collected essential demographic information and
identified the aspects that concern HC patients the most.”
Romero-Cortadellas L, Venturi V, Martín-Sánchez JC, Toska K, Prince D, Butzeck B, Porto G, Milman NT, Committee HS, Sánchez M. Haemochromatosis patients’ research priorities: Towards an improved quality of life. Health Expect. 2023 Dec;26(6):2293-2301. doi: 10.1111/hex.13830. Epub 2023 Jul 28. PMID: 37503783; PMCID: PMC10632644.
2012: Listening to the patients’ voice: the first European survey ABOUT Genetic Information IN Hemochromatosis (Results to be published at the BioIron London April 2013).
2011: Costs for biochemical tests; use of removed blood in EU. (Download)
2nd Survey on HH-treatment 2010. (Download)
1st Survey on HH-treatment 2007.