Other projects and cooperations
JARDIN Joint Action
To improve the accessibility of the ERNs for patients across Europe, the EU has funded a pioneering 3-year project involving all member states (MS) plus Norway and Ukraine, the Joint Action on Integration of ERNs into National Healthcare Systems (‘JARDIN’). https://jardin-ern.eu/
European association for the study of the liver (EASL)
EASL aims to spread knowledge and expertise in best practices and scientific breakthroughs in Hepatology.
https://easl.eu/
European society for Paediatric gastroenterology hepatology and nutrition (ESPGHAN)
The European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) is a multi-professional, non-profit organisation whose aim is to promote the health of children with special attention to the gastrointestinal tract, liver and nutritional status, through knowledge creation, the dissemination of science based information, the promotion of best practice in the delivery of care and the provision of high quality education for paediatric gastroenterology, hepatology and nutrition professionals in Europe and beyond.
IRCPSS
The IRCPSS (International Registry of Congenital Porto-Systemic Shunts) is an international registry that collects and analyzes data on congenital portosystemic shunts—rare vascular malformations where blood bypasses the liver. Its goal is to improve understanding, diagnosis, treatment, and long-term outcomes of this condition in both children and adults.
In addition, the initiative hosts regular virtual IRCPSS Clinical Case Conferences, where experts in paediatric or adult care are invited based on the specifics of each case.
For more information, please visit their website or contact the team via email (ircpss.contact@hug.ch).
The Connecting Europe Facility (CEF)
The CEF is a key funding instrument and provides indispensable support to develop the infrastructure necessary to run a successful ERN. Thanks to CEF funding, we are technically equipped to connect health care providers for online consultation and greatly contribute towards the improvement of rare liver patient care.
https://hadea.ec.europa.eu/programmes/connecting-europe-facility_en
European Society of Human Genetics (ESHG)
The European Society of Human Genetics is a non-profit organization. Its aims are to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe.
The European Rare Disease Research Coordination and Support Action consortium (ERICA)
The European Rare Disease Research Coordination and Support Action consortium (ERICA) is a Horizon project in which all 24 European Reference Networks (ERNs) take part, is to build on the strengths of the individual ERNs and create a platform that integrates the research and innovation capacities of all ERNs.
ERICA | The European Rare Disease Research Coordination and Support Action
Filière de santé des maladies rares du foie (FILFOIE)
The French Network for rare liver disease in adults and children.
https://www.filfoie.com/
Vascular Liver Disease Group (VALDIG)
An independent network of researchers with a common interest in Vascular Liver Diseases.
http://valdig.eu/
Orphanet
Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Orphanet also maintains the Orphanet rare disease nomenclature (ORPHAcode), essential in improving the visibility of rare diseases in health and research information systems.
https://www.orpha.net/
YAEL Stiftung (YAEL foundation)
Find information here: https://yael-stiftung.de/