BRUSSELS, April 24, 2015 /PRNewswire/ --
There are approximately nine million people in Europe infected with the hepatitis C virus, with tens of thousands of new cases diagnosed each year - and this trend is rising. Currently there is no single online resource where people diagnosed with hepatitis C can go to find out more about the condition, how to manage it and how to get support. With today's launch of 'C: My Journey', The European Liver Patients Association (ELPA) aims to address this vital information gap.
ELPA President, Mrs Tatjana Reic, said, "Hepatitis C is a complex condition and everyone's journey is different. One of the many challenges that people living with hepatitis C face is finding clear and accessible information that is relevant to their own experience. 'C: My Journey' is an online resource that leads individuals living with hepatitis C to the information and support that is relevant for their stage of disease, lifestyle and demographic."
'C: My Journey' is now available via the ELPA website (http://www.elpa-info.org/cmyjourney.htm). The English-language guide is also translated into four regional languages to reach patients in countries with both a high prevalence of hepatitis C and a general lack of patient support resources. These include Bulgaria, Turkey, Romania and Macedonia. A Hungarian version will be available in the coming weeks. In addition, the guide will be presented at The International Liver Conference™ in Vienna, 22-26 April 2015.
'C: My Journey' is a digital pathway for patients made up of 16 questions and nine supporting resources, complemented with links to relevant information on treatment options and liver patient organisations. It is primarily aimed at newly-diagnosed patients but is relevant for anyone with hepatitis C.
The prevalence of hepatitis C in Europe varies between the individual countries from up to 0.1% in Belgium to 3.5 % in Romania, while regions in some countries report rates over 9%, including Italy and Turkey. However, it is estimated that 90% of those infected with hepatitis C are not aware of their infection, as the virus generally only causes serious symptoms in its final stages. If left untreated, the virus can be fatal, with 86,000 people dying from its consequences every year.
With a number of highly effective new treatments now available to patients, for the first time the possibility of cure is in sight for many people living with hepatitis C. This is why it is more important than ever to make sure that patients have access to the latest information and resources to help guide them on their treatment journey.
Mrs Reic, added, "Ultimately, we hope that with 'C: My Journey', we will help people diagnosed with hepatitis C to be better informed and better able to participate in discussions with their doctor about how best to manage and treat their condition".
'C: My Journey' was supported by Bristol-Myers Squibb through an unrestricted educational grant.
ELPA's aim is to promote the interests of people with liver disease and in particular: to highlight the size of the problem; to promote awareness and prevention; to address the low profile of liver disease as compared to other areas of medicine such as heart disease; to share experience of successful initiatives; to work with professional bodies such as EASL and with the EU to ensure that treatment and care are harmonised across Europe to the highest standards.
ELPA emerged from a desire amongst European liver patient groups to share their experiences of the often very different approaches adopted in different countries. In June 2004, 13 patient groups from 10 European and Mediterranean Basin countries met to create the association. ELPA was formally launched in Paris on April 14th 2005 during the annual conference of the European Association for the Study of the Liver (EASL) and now has 34 members from 26 countries.
For further information on activities being undertaken by ELPA, please visit http://www.elpa-info.org
1. ELPA. "Hepatitis C Understanding a silent killer." 2012. Available at: http://www.elpa-info.org/tl_files/elpa_downloads/2012/ELPA-HepC_Booklet2012-FINAL-small.pdf . Accessed April 2015
2. 'ECDC; Hepatitis B and C in the EU neighborhood: prevalence, burden of disease and screening policies,' September 2010. Available at: http://www.ecdc.europa.eu . Accessed April 2015
SOURCE European Liver Patients Association (ELPA)