Upcoming Events

This ERN RARE-LIVER Webinar on 25 June 2024 at 5 pm will focus on liver cyst infection, the feared complication of cystic liver disease.

Many thanks to all members and friends who visited us at EASL again this year for the interesting discussions and inspiring conversations.

ERN RARE-LIVER had a great time at ESPGHAN 2024 in Milano.

Your liver is an incredible organ, performing more than 500 vital functions, such as filtering toxins and aiding in digestion and metabolism. Yet, liver health is often overlooked. Each year, thousands of people are affected by liver disease. 1.5 billion people live with chronic liver disease, and 2 million lives are lost yearly. Early prevention can save many of these lives.

This ERN RARE-LIVER Webinar on 9 April 2024 at 5pm will focus on liver involvement in patients with Fontan-type circulation. Fontan-associated liver disease is an orphan, novel, and challenging chronic liver disorder that appear in patients with univentricular cardiac malformations treated with Fontan surgery. ERN and EASL have recently launched a position document focusing on management of this particular and fragile population. We consider that the diffusion of this document conclusions is an unmet need that should be addressed.

The last meeting of the Patient Representatives took place on 19 February 2024.

In this XI Latvian Gastroenterology Congress held on 9 December 2023, Professor Indra Zeltiņa (Latvia), Professor Piotr Socha (Poland), and Dr. Inita Kaže (Latvia) discussed various topics related to rare liver diseases, including Wilson's disease, autoimmune hepatitis, and hepatobiliary diseases in childhood.

On 7 March 2024, 15:00 - 17:00 CET a panel of international speakers show different perspectives (senior intensivist, cardiologist and surgeon) on this increasingly prevalent condition.

The Wilson Aarhus 2024 symposium will be an up-to-date, evidence-based, clinically orientated symposium with distinguished international faculty. Basic, clinical and translational research work by junior investigators will also be presented.

Following the previous successful iterations in Hamburg, Newcastle, Vienna and Maastricht, this in-person workshop focussed on advancing research in AIH, strengthening existing networks and building new ones.

Fontan Circulation CLASSROOM COURSE LIVE STREAMING BROADCAST

This ERN RARE-LIVER Webinar on 12. December 2023 at 5pm gave an exciting update to the Alpha-1 antitrypsin deficiency. The presentation covered "siRNA therapy in hepatology: a1-AT deficiency". The download for the Webinar on EASL Campus will follow soon.

At a conference in Bilbao in this October, the European Economic and Social Committee (EESC) urged the European Union to launch an action plan stepping up cooperation between national health systems.

The next Strategy Meeting for the Management Board Members will take place on 11 & 12 December 2023. The aim of this meeting is to define the strategy for the next year and to talk about the objectives that we want to achieve.

It was a great pleasure for the ERN RARE-LIVER office team to welcome all of you at this year’s Members’ Meeting in Hamburg.

This workshop took place 28 - 29 August in Padua discussing the impact of IBD activity on PSC and risk of colorectal cancer, treatment specificities in PSC-IBD, IBD course before and after liver transplantation and Pouchitis and pouch failure in PSC-IBD.

The INTERNATIONAL EXPLORATORY WORKSHOP supported by ERN RARE-LIVER, the Vascular Liver Diseases (VLD) Working group and VALDIG was an excellent opportunity to discuss and expand the possibilities of joint collaboration.

Interesting talks and lectures at EASL CONGRESS in Vienna. Many of our members were involved as speakers doing presentations, talks and discussions, presenting cases to a wide audience of more than 8400 visitors registered. Ida Schregel had an excellent talk

Event to share knowledge across ERNs: expertise pursuing consensus

The PLD workgroup met on June 6 in Nijmegen, the Netherlands. During the program physicians, researchers and patient associations discussed the most recent PLD guidelines, the disease's impact on HRQoL and the current management options with their limitations.

Friutfull 1st International Workshop on Future Therapies in Autoimmune Hepatitis with experts from various different scientific fields. The outstanding success of this workshop was the cooperation not only of clinicians but also of biostatisticians, patient advocates and medical officers from the FDA.

ERN RARE-LIVER will be present again at the ESPGHAN Congress.

The workshop will foster international networking between participants and will present a forum to discuss ongoing research projects together with internationally recognized experts in basic science and immunology.

Speakers: Thomas Reiberger (Vienna General Hospital), Lukas Burghart (Vienna-Ottakring municipal hospital)

Chair: Christoph Schramm (University Medical Centre, Hamburg-Eppendorf) Speakers: Marie-Cécile Gaillard (Orphanet), Céline Angin (French National Rare Disease Registry)

17 to 18 March 2023, Monasterium PoortAckere, Ghent, Belgium (monasterium.be) Please register by 15 November 2022.

The Adriatic liver forum is a traditional regional monothematic conference dedicated to liver diseases, that takes place each year in Zagreb. The next conference is planned for February 17th or 24th 2023 and the main topic will be Rare liver diseases. The Adriatic liver forum is endorsed by ERN RARE-LIVER.

We want to draw your attention on the Graft-Injury-Group meeting in Tübingen, Germany on 2-3 February 2023. Leading translational and clinical researchers from paediatric and adult hepatology from all over Europe are welcome. You can find more information on our website like the agenda, different topics and sessions as well as the map that shows you how to get there.

THIS COURSE WILL BE ORGANIZED IN HYBRID FORMAT.

*Agenda:* *Mara Cananzi* BILE ACID SYNTHESIS DISORDERS: a diagnosis that should never be missed *Emmanuel Gonzales* BILE ACID SYNTHESIS DISORDERS: French experience in long-term treatment with cholic acid *Discussion*

*Chairs:* Björn Fischler (Karolinska University Hospital Stockholm), Ekkehard Sturm (University Hospital Tübingen)

Hôtel de Ville de Paris November 29th and 30th 2022 Organizing committee: Laure Elkrief, Virginia Hernandez-Gea, Marco Senzolo and Pierre-Emmanuel Rautou

We would like to draw your attention to the new EASL Clinical Practice Guideline on Sclerosing Cholangitis, which has been published in June 2022. We are grateful to all the authors and panelists, most of them from ERN centres. The ERN RARE-LIVER endorses this guideline and we request you to share this with your teams in order to further improve care for our patients with PSC and other forms of sclerosing cholangitis.

Our nurses team at ERN RARE-LIVER is preparing a webinar aimed at fellow nurses, including presentations and a discussion round.

h3. Chairs: Aurélie Plessier/ Filipe Nery

Topic: The new EASL Clinical Practice Guidelines on the management of cystic liver diseases

The 5th Inter­na­tio­nal Con­fe­rence on Pe­di­a­tric Li­ver Di­sease: 08-09 September 2022, Hybrid Conference @Dorint Hotel Hamburg and Online

For more information, please open the flyer on the right and check the meeting website: http://www.bard-online.com/

On the evening of Thursday 23 June, we took a chance to have an informal gathering in London where the adult hepatologists had the opportunity to catch up and enjoy each other’s company in a relaxed and informal setting.

The long wait has paid off. It was wonderful not only to see you, but also to see the progress that has been made since our last meeting.

To bridge the gap until the full-scale two day meeting in summer 2022.

Marianne Hørby Jørgensen, Henning Grønbæk and Henriette Ytting Lambert are inviting to the 2nd hybrid Quality of Life Workshop. To register, please send a message to the ERN office.

h3. Topic: Training program for Patients with Rare Liver Diseases – Dos & Don’ts Our nurses team at ERN RARE-LIVER is preparing a webinar aimed at fellow nurses, including presentations on patient education in different rare liver diseases and a

The ERN RARE-LIVER special interest group of ESPGHAN had a separate meeting on 22 June.

We invite all our members and partners to a big online meeting. We will hear news from the working groups and show our plans for 2023. After the meeting, presentations will be available for download on the ERN Collaborative Platform

More information will follow in due course.

More information will follow in due course.