OASIS Summer Symposium 2023 (english version)

OASIS summer symposium 2023

Holistic Care Hirschsprungs Disease: Patient centered care in Hirschsprung Disease (HSCR) and Total Colonic Aganglionosis (TCA)- Optimizing the pathway of care- including pre and postoperative care


27.7-29.7.2023 Rostock Warnemünde Hotel Neptun


We kindly invite you to our Summer Symposium on Holistic Care in Hirschsprungs Disease.

We are honoured to organise the first Paneuropean Scientifique Symposium on holistic care in Hirschsprung Disease and Total Colonic Agangliosis.

A Collaboration between clinicians and patient associations from Poland, UK, Italy, Netherlands, Austria and Germany will take place in Warnemünde organised by the Rostock Colorectal Center. Hirschsprung Disease (HSCR) is a rare disease affecting the capability to transport and pass stool resulting in obstruction of the bowel.

Approximately 1:5000 liveborn babies are affected. The most severe form Total Colonic Aganglionosis (TCA) affects 2-5 % of all children with HSCR.

Clinicians, researchers and patient representatives will discuss how to best enable holistic care.

During our symposium patient concerns are in the center of attention.
We will discuss excisting models of care and  aim to develop pathways for holistic care in european collaboration.


Topics include:   

1 Patient and Family needs before and after surgery

2 Patient support groups for Hirschsprung’s in Europe- ideas for cross collaboration

3 Optimal bowel management

4 Surgical Strategies in Hirschsprungs and Total Colonic Aganglionosis

5 Quality of Life Aspects, Longitudinal follow up, Continence Score

6 Transition

The Symposium will be open to everyone. We would love to involve clinicians (doctors and allied health professionals), scientist, patient associations to come together to share clinical experience and discuss how to enable best care for this patient group and their families.


Please register here


Please select from one of the following options;

for EUPSA members 10% reduction - please send member number

 early bird before 15.06.23regular after 16.06.23
consultant230 €260 €
trainee200 €230 €
alled health professional150 €180 €
students and patient association representative80 €110 €


Account information:

Deutsche Bundesbank

IBAN: DE70 1300 0000 0013 0015 29


Verwendungszweck: OASIS 2023 , Name


More information please contact us: OASIS.HolisticHirschsprungs{bei}gmail.com


This Networking event has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575, Kindness for Kids: Stifung für Kinder mit seltenen Erkrankungen as well as from the DFG: Deutsche Forschungsgemeinschaft Förderung zur Durchführung internationaler wissenschaftlicher Fachtagungen.

This Event is EUPSA (European Paediatric Surgeons’ Association) approved.


DAY 1  




Welcome Stefanie Märzheuser, Judith Lindert  


9.15 - 10.30  

I Providing the theoretical framework of parents support groups in pediatric rare diseases: Hirschsprungs Disease & total colonic aganglionosis   

Sabine Alexander, Marijke Pfaff-Jongmann, Karolina Staszkiewicz 

IICommon needs in uncommon conditions: core components that reflect the need of parents and patients in A) Hirschsprung Disease and B) total colonic aganglionosis    

Ernica Pathway and Patient Journey- Carlotta de Filippo, Pisa 

Ernica Pathway Patient Association - Sabine Alexander 

 Centralisation - Pernilla Sternström 

Stefanie Märzheuser, Anette Lemli  

10.30 - 11.00  



11.00 - 13.00  

III Patient centered view  

From patient side: Core Outcome Patient perspective- Panel Discussion  

Anette Lemli, Germany 

Duccio Cavalieri, Italy 

Karolina Staskiewicz, Poland  

Marijke Pfaff-Jongmann, Netherlands 


From doctor side: Core Outcome Care Team perspective  

IV a) Long-term Monitoring and Clinical Evaluation  

CSOR: Children’s Surgery Outcome Reporting programme - Core Outcome Hirschsprung,  Ben Allin, London 

Longitudinal Outcome Total Colonic Alessio Prini Prato, Alessandria 

b) Long-term Quality of Life, Sexual Function  

Joseph Davidson, London 

c) Longitudinal individual follow up  

Real-Time Data Collection and Assessment of Standardised Data Outcome Data in Children with Colorectal Conditions 

Stavros Loukogeorgakis, London 

Roxana Rasoulli-Kirchmeier, 

Stavros Loukogeorgakis 




13.00 - 14.00  

Lunch break  


14.00 - 15:30  

V Perioperative Care and Bowel Management  

Other health care professions: Physician Associate Nikita Halai, London 

Bowel Management Nurse: Galina Garbolinski , Rostock 

Perioperative bowel management: Judith Lindert, Rostock 

Bowel Management Training Seminar: SOMA 



15.30 - 16.00  



16.00 - 17.30  

Surgical Strategies Hirschsprung a 18+2min 

Joe Curry, London 

Jan-Hendrik Gosemann, Leipzig 

Andrzej Golebiewski, Gdansk 

Ernica guideline rectosigmoid 

Discussion 10min 

Stefanie Märzheuser 

Annita Budzanowski 






Drinks by the Beach  








DAY 2  



9.30 - 10.30  

Surgical Strategies Total Colonic a 18+2min 

preoperative management TCA- Paola Midrio, Treviso 

Surgical Approach Stefanie Märzheuser, Rostock 

Alessio Prini Prato, Alessandria 

One other contribution- case to introduce? 

Discussion 10-30min 

Joe Curry 

Judith Lindert 


10.30 - 11.00  



11.00 - 12.00  

If problems remain after surgery a 15+5 

Postoperative motility problems- Udo Rolle , Frankfurt 

Contributions of a Specialist Nurse Team- Julie Ann-Milburry, London 

Free manuscripts, cases   




Paola Midrio, 

Anna Modrzyk 




Expert Round  

My unsolved questions and cases 10+5min 

Case I - Anna Modrzyk, Zabrze 

Case II - Paola Midrio, Padova 

Case III- Andrzej Golebiewski 

Case IV-Joe Curry 

Case V- bring your case 


Stefanie Märzheuser 

Alessio Prini Prato 

13.00 - 14.00  

Lunch break  


14.00 - 16.00  

V Transition  
a) Patient experience and expectations  30min 

Anette Lemli, Germany 

Carlotta de Filippo, Italy 

Karolina Staskiewicz, Poland 


Panel Discussion Patient Representative groups   


b) Paediatric surgery  40min 

Speed dating: european transition reality in Hirschsprungs 5min intro     

The dutch experience: Roxana Rasoulli-Kirchmeier 

The italian experience: Duccio Cavalieri 

The british experience: Annita Budzanowski 

The german experience: Felix Schulze 

The polish experience: Michael Parsierbek 

The austrian experience: Eva Amerstorfer 

The norwegian experience: Anders Holle 

The swedish experience: Pernilla Stenström 


Talk Transition Joe Curry 15min 


c) Adult   

Transition of adolescence with Hirschsprung – adult perspective  15min 

Von Ammon, Eberhard 


Discussion 20min 

Joe Curry  

Carlotta de Filippo  

16.00 - 16.30  





Holistic Continence Score- Satellite Seminar- sponsored by European Reference Network – Hybdrid a 15min 

Systematic Review Bowel Function Score Anders Holle, Oslo  

Real-Time Data Collection and Assessment of Standardised Data Outcome Data in Children with Colorectal Conditions 

Stavros Loukogeorgakis, London 

Eva Amerstorfer, Graz 



Judith Lindert, Eberhard Schmiedeke 


Boat trip 





DAY 3  



9.00 - 10.30  

Nutrition, Dietician, Microbiom   

  • Nutrition aspects for children with Hirschsprung, Pernilla Stenström 
  • Nutrition Experience in Hirschsprungs, Joseph Davidson 10min 
  • Role of Microbiome- Duccio Cavalieri, Firenze 25min 
  • Gastroenterological Aspects of Hirschsprung, Martina Kohl, Lübeck 18+2 


Duccio Cavalieri  

Martina Kohl  


10.30 - 11.00  



11.00 - 13.00  

Network Working Strategy/ Position Paper Construct  

Breakout Groups  


Joseph Davidson, Judith Lindert 

13.00 - 14.00  

Summing up and farewell