A new forum for patients and families has been created by the SIOPEL group. It aims to offer high-quality supports to families who would like to have more information on the two most common liver tumours in children: hepatoblastoma and hepatocellular carcinomas. It is supervised by two moderators one of whom is a parent and another one is a survivor.
Hepatoblastoma (HB) and hepatocellular carcinomas (HCC) are the two most common primary malignant liver neoplasms in children. They are very rare forms of childhood malignancies and occur in children under 15 years of age.
Treatment of hepatoblastoma in Europe is organised within the framework of SIOPEL, which is the Childhood Liver Tumour Study Group. Recently SIOOPEL has joined forces with three other major international liver tumor study groups (U.S. COG, the German GPOH, and the Japanese J PLT) to build the single largest retrospective patient dataset (1605 children with hepatoblastoma collected under CHIC initiative) and designing a common international treatment and study protocol for pediatric liver tumors.
What is the Patient/Familiy Forum?
- This newly established Liver Tumours Patient/Family Forum will provide users with an opportunity to share their experiences, information and advice within an international community of parents, patients and survivors.
- The forum is situated in a secure and trusted website and it will be moderated by a parent and a survivor representative.
- An on-line medical consultation service led by well-known and recognized experts in the field is available within the forum.
How do I get access to the Patient/Family Forum?
If you wish to join the forum, you can register at the following address: www.siopel.org/register
Here you can download the leaflet.
The research leading to these results has received funding from the European Union`s Seventh Framework Programme (FP7/2007-2013) under the project ENCCA, grant agreement HEALTH-F2-2011-261474. www.encca.eu