Upcoming Events

The German Wilson-Patient Association will hold its next doctor-patient symposium on Saturday, 18 October 2025, in Heidelberg. This German-language event, also available online, offers informative talks on Wilson disease and opportunities for direct discussions with experts and fellow patients, especially suited for newly diagnosed patients and their families.

This ERN RARE-LIVER Webinar on 14 October 2025 at 5pm (CET) will be a webinar from the ERN RARE-LIVER Alveolar Echinococcosis Working Group.

The Hepaturix Association in Portugal is currently developing a new project and is organising several events as part of this in 2025. In addition to the Hepaturix Association, the Paediatric Hospital of Coimbra and members of our ERN RARE-LIVER Youth Panel are involved as well.

This ERN RARE-LIVER Webinar on 16 September 2025 at 5pm (CET) will be a joint webinar between Paediatric Hepatologists, Paediatric Surgeons, and Transplant Surgeons.

The ERN RARE-LIVER Quality of Life (QoL) Workshop in Warsaw will bring together international experts to advance PSC-specific approaches to quality of life assessment in research and care.

This ERN RARE-LIVER Webinar on 15 July 2025 at 5pm (CEST) will be a joint webinar with UMCG-Groningen, UKE-Hamburg and Amsterdam University Medical Centre.

ERN RARE-LIVER will be present at ESPGHAN 2025, taking place from 14–17 May at Messuaukio 1, 00520 Helsinki – and we look forward to connecting with you there!

ERN RARE-LIVER will be present at the EASL Congress 2025, taking place from 7–10 May in Amsterdam – and we’re excited to connect with you there!

The Hepaturix Association in Portugal is currently developing a new project and is organising several events as part of this in 2025. In addition to the Hepaturix Association, the Paediatric Hospital of Coimbra and members of our ERN RARE-LIVER Youth Panel are involved as well.

The first Rare Liver Diseases Masterclass, organised by the British Association for the Study of the Liver (BASL), will take place from 15 to 16 June 2025 at King’s College London.

This ERN RARE-LIVER Webinar on 17 June 2025 at 5pm (CET) will be a joint webinar with the PSC and Transition Working Groups.

This ERN RARE-LIVER Webinar on 20 May 2025 at 5pm (CET) will be a joint webinar with the PBC and AIH Working Groups.

The ERN RARE-LIVER plans to fund workshops of disease working groups and other initiatives in 2026. We want to especially encourage disease working groups to engage their members through structured workshops and meetings aimed at collaboration and discussion.

This meeting will bring together leading researchers and experts on cutting-edge advances in liver and pancreas biology. It will discuss progress in our understanding of biological mechanisms underlying human metabolic diseases, as well as development of novel therapeutic strategies.

This ERN RARE-LIVER Webinar on 28 January 2025 at 5pm (CET) will be a collaboration with University of Modena and Reggio Emilia, Italy and Medical University of Innsbruck-Department of Medicine I.

This ERN RARE-LIVER Webinar on 15 April 2025 at 5pm (CET) will be a joint webinar with The Chil-dren's Memorial Heath Institute (Poland), Hôpital Femme Mère Enfant (France) and Aarhus University Hospital (Denmark).

On 27 November, the Infant Cholestasis Update Course will take place, organised with the support of the Vall d'Hebron Institute of Research and the scientific endorsement of the Spanish Society of Paediatric Gastroenterology, Hepatology and Nutrition (SEGHNP).

This ERN RARE-LIVER Webinar on 17 December 2024 at 5pm (CET) will be a collaboration with the ERN RARE-LIVER Transition, Pregnancy and Youth Panel groups.

This ERN RARE-LIVER Webinar on 4 March 2025 at 5pm (CET) will be a joint webinar with Universi-ty Hospital Aachen and The Children’s Memorial Health Institute Warsaw.

This ERN RARE-LIVER Webinar on 18 March 2025 at 5pm (CET) will be a collaboration from the VALDIG group.

The ERN RARE-LIVER EASL ACADEMY 2025 will be hosted by the university hospital of Heidelberg and will focus on rare liver diseases with special focus on translating clinical practice guidelines in real-life care.

This ERN RARE-LIVER Webinar on 17 September 2024 at 5pm (CEST) will focus on how to communicate with adolescents and young adults.

This ERN RARE-LIVER Webinar on 17 September 2024 at 5pm (CEST) will focus on how to communicate with adolescents and young adults.

Save the date for our Members’ Meeting in Barcelona on 23 + 24 January 2025. Participation is limited to two representatives per member centre, including affiliated partners. One of the participants can be funded per centre, according to EC regulations (EU unit costs).

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.

Announcement of the organiser: September 2024

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.

Save the Date! Our next Member’s Meeting will take place online on 8 February 2024 from 5:00 to 8:00 (CET). An official invite will follow soon as well as a template for every working group to present the achievements of the last six months and the plans for the upcoming six months.

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.

This joint VALDIG-ERN-EASL Webinar gathered a panel of experts in the field and promoted vivid discussion in order to improve care for these rare and somehow difficult-to-treat patients. Even though vascular liver disorders are rarely reported events, liver transplantation may be considered when an acute liver failure occurs, as for acute Budd-Chiari syndrome, or complications of portal hypertension arise in the context of porto-sinusoidal vascular liver disorder. Yet, few data exist considering indications and outcomes of liver transplantation in these and other rare vascular liver disorders.

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.

The ERN RARE-LIVER team is happy to invite you to our upcoming Members’ Meeting on 1 and 2 September 2023 at University Medical Centre Hamburg-Eppendorf in "Erika-Haus".

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 on

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

Event to share knowledge across ERNs: expertise pursuing consensus

The call for ERN RARE-LIVER EASL ACADEMY for 2024 is out! Apply for organisation if you are interested.

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.

International experts are invited to attend the 1st International Workshop on Future Therapies in Autoimmune Hepatitis (AIH), taking place in Hamburg, Germany on June 1-2, 2023. The workshop will focus on updates on current therapeutic strategies for autoimmune hepatitis, the clinical need for new therapeutic approaches, ongoing and future clinical trials, patient reported outcomes & quality of life under treatment and a concluding session regarding the conceptual design of a multicenter randomized controlled trial in autoimmune hepatitis.

To meet the increasing demand of onsite training for young fellows in the field of rare diseases, ERN RARE-LIVER was pleased to announce the ERN RARE-LIVER EASL ACADEMY. This academy, organised by members of the ERN RARE-LIVER, aims to deliver up-to-date knowledge on rare liver diseases to junior clinicians.

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.

We are happy to invite all members and partners of ERN RARE-LIVER to the Members' Meeting in September 2022.

A CPMS case will be prepared by the CPMS helpdesk. We will invite experts who discuss the case live on the CPMS platform. Other participants will be welcome to listen in.

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.

This was a great opportunity to meet again and share news from the Coordinating team and the ERN's working groups!

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.

A session dedicated to ERN RARE-LIVER, led by Ekkehard Sturm, was held at the ESPGHAN Annual Meeting. The new ERN RARE-LIVER coordinator, Ansgar Lohse provided an overview of the status and plans of the network.