FH networks: the HoFH International Clinical Collaboration; FH Europe
Familial Hypercholesterolaemia (FH) is a common genetic disorder associated with premature cardiovascular disease. Many people have FH and do not know it, and will perhaps not know it until they suffer a premature heart attack. There is a global need to initiate programmes to find and treat persons with FH. The tools are there to be used, the costs are low relative to the number of lives saved, and the potential health benefits are huge.
September 24 is FH-awareness day. All this week, in a series of newsletters, EAS highlights activities that are putting FH on the public health agenda. In this newsletter, we look at the aims and activities of two other FH networks, HICC and FH Europe.
The HoFH International Clinical Collaboration (HICC)
A part of EAS-FHSC, the recently launched HoFH International Clinical Collaboration (HICC) registry aims to create a formal international network of healthcare providers who manage HoFH patients that transcends the regional nature of current efforts. The registry will allow collection of de-identified data relating to the clinical, genetic features and treatment of HoFH, with the goal to reach more than 500 HoFH patients. This will provide insight into the prevalence, clinical consequences and treatment of HoFH and promote actions to improve current approaches to diagnosis and therapy.
Read more and contact >>
Network of the European FH patient organisations, FH Europe
FH Europe actively works to secure as early as possible identification and diagnosis of FH patients to prevent early cardiovascular disease. The network shares information and best practice across groups Europe, works with experts to focus on themes and topics of interest to the patients and families they represent, and supports development of newer or smaller patient groups and individuals wanting to start a patient group in their region.
During FH Awareness Week FH Europe is running a campaign on Twitter: @fhpatienteurope under #findFH.
For more information about FH Europe >>
To EAS calendar of FH activites worldwide >>