Monothematic Conference Alagille Syndrome

January 26 - 28, 2023


General Information

Alagille syndrome is a genetic disorder that affects primarily the liver and the heart. Problems associated with the disorder generally become evident in infancy or early childhood.
The disorder is inherited in an autosomal dominant pattern, and the estimated prevalence of Alagille syndrome is 1 in every 30,000 to 1 in every 40,000 live births. It is named after the French pediatrician Daniel Alagille, who first described the condition in 1969 Severe liver disease is a major cause of morbidity.
Increased plasma bile acid levels may cause severe pruritus, necessitating biliary diversion procedures. Liver transplantation may be required  in patients with progressive liver synthetic dysfunction, intractable pruritus, osteodystrophy, or massive variceal bleeding.
We aim at increasing awareness and knowledge of the disease within our society, as we believe a better diagnosis skills and treatments are necessary.

This school is supported by the ESPGHAN Education Partner Programme.


This school is planned for onsite and online participation. We will be carefully monitoring the situation in Europe as well as national COVID-19 regulations. ESPGHAN reserves the right to postpone/cancel the course or change its current format if deemed necessary to protect the health of our delegates, faculty and staff.

For more information please contact the ESPGHAN Office.

Registration & Fees

Registrations will remain open for online attendance.

Deadline to register onsite is December 15, 2022  

Registration fees applicable to onsite and online attendance:

  • ESPGHAN members 200 EUR
  • Non members 350 EUR

Kindly use the online registration form on this page. Registrations by email cannot be accepted. If you experience any issues with the online tool, please contact

Registrations will be accepted on a 1st come, 1st serve basis, up to a maximum of 65 delegates. Please be aware that the course might be full before the registration deadline, in which case your name will be added automatically to the waiting list.

The course language is English.


DAY 1: January 26 2023

13.50-14.00         Welcome & Introduction

                               Session 1.  Alagille – A multisystemic disease (I)

14.00-14.30         Introduction to Alagille syndrome - Dominique Debray (France)

                               History & Legacy

                               Old Vs new era 

14.30-15.00         Clinical Features – The Liver - Emmanuel Gonzales (France)

                              Clinical mimics in the neonatal period

                               Histopathology (early Vs late)    

15.00-15.30         Clinical features – The HEART - Elchannan Bruckheimer (Israel)

                               Underdiagnosis of Alagille

                               Vasculopathy in ALGS    

15.30-16.00         Coffee Break     

16.00-16.30         Renal manifestations in ALGS - Hadas Alfandary (Israel)

                              Renal sparing programs in ALGS

16.30-17.00         CNS and ALGS - Binita Kamath (Canada)

                               Vascular, neurodevelopment, cranial malformation, hearing deficit,

                               Opthalmologic diseases         

17.00-17.30         Case presentation and discussion        -      Orith Waisbourd-Zinman (Israel)

DAY 2: January 27 2023

                             Session 2 Alagille – A multisystemic disease (II)

09.00 – 09.30     Co-morbidities in Alagille - Aglaia Zellos (Greece)

                             The Endocrinology side  (bone disease, GH, Hyperlipidemia)       

09.30 – 09.45     Abstract   Rapid growth and scoliosis -  M.Nedo (Croatia)          

09.45 – 10.15      Imaging – what can we learn - Stephanie Abella (France)

10.15 – 10.45      Coffee break     

10.45 – 11.15      Genetics – animal models - Emma Andersson (Sweden)

11.15 –11.45       Genotype & Phenotype - Richard Thompson (UK)

                              Genetics  diagnosis and counseling       

11.45 – 12.00     Abstract  - Functional characterization of VOUS in ALGS - N. Buhl (Germany)             

12.00 – 12.30     Quality of Life with ALGS - Yael Mozer Glassberg (Israel)

                              Xanthomas – appearance & motor disturbance options

12.30 – 13.30      Lunch   

                              Session 3.  Treatment

14.00 – 14.30      Nutrition and ALGS - Sara Mancell (UK)

                               Growing on different curves                                

14.30 – 14.45      Abstract-Neonatal cholestasis with hypoplastic biliary tract – is it ALGS - 

                               B. Kohlmaier (Austria)          

14.45 – 15.15       Tea break           

15.15 – 16.00       Pruritus the devastating story of ALGS - Henkejan Verkade (Netherlands)

                               Best treatment option

                               ASBT inhibitor in AGLS  

16.00 – 16.15      Abstract -  Phenotypic divergence of JAGGED1 and NOTCH2 – GALA study group - 

                              S. Vandriel (Canada)    

16.15 – 17.00      Liver transplantation: Indications and risk management - Tambucci Roberto (Bruxelles)

                              Diversion - Is there still a need for surgical diversion in ALGS


DAY 3: January 28 2023


                              Session 4.  Alagille – the future

09.00 – 9.30        Long term outcome and transition to adult clinic of ALGS patients - Marianne Samyn (UK)

09.30 – 09.45     Lessons learned from the GALA Registry Binita Kamath (Canada)

9.45 – 10.30        What don’t we know and What’s needed to be study - Binita Kamath (Canada),

                               Henkjan    Verkade (Netherlands)

10.30 – 11.00     Coffee break     

11.00 – 11.30     Q&A Panel (participants and video recorded from patients)  Yael Mozer Glassberg       

11.30 – 11.45     Summary and closing remarks

                             What would Alagille think of his syndrome in 21st century?  Yael Mozer Glassberg         

Cost Coverage

ESPGHAN will cover the following for onsite delegates

  • 2 nights accommodation in single occupancy (pre-arranged by ESPGHAN)
  • Dinners (pre-arranged by ESPGHAN)
  • Course catering
  • Course Material


For all delegates:

Everyone may submit an abstract.

The faculty will review all submissions and select a small number for presentation in the course.

If your abstract gets selected you will be notified about presentation details in due time before the conference.

For trainees only:

Please be advised that it is mandatory for trainees to submit an abstract to be able to attend the course.

The faculty will review all submissions and select a small number for presentation in the course.

The best 3 presentations given by trainees will be awarded with a contribution towards your travel costs.


If you have any questions, please contact the ESPGHAN Office for details.

Phone: +41 (0)22 9000 401