Virginie Cluzeau © Virginie Cluzeau

France

N-ECCO National Representative:
Virginie Cluzeau
Job Title: 
Clinical research and patient education IBD Nurse

What influenced your decision to apply for the role of N-ECCO National Representative for your country?

The nurse that I replaced as French representative 4 years ago explained what the position involved. I was really interested to know how it works for nurses in other countries, and I thought that taking up this role could be useful in improving the position of IBD Nurses in France.

Lithuania

Name of group: IBD Group of Lithuanian Society of Gastroenterology

Number of active members: 28

Number of meetings per year: 4–5

President and Secretary:

Gediminas Kiudelis: President

Juozas Kupčinskas: Secretary General

National Representatives: 

Limas Kupčinskas

Gediminas Kiudelis

Joined ECCO in:

The IBD Group of Lithuanian Society of Gastroenterology joined ECCO in 2002.

Incidence of IBD in the country: 11.6/100,000

Czech Republic

Name of group: The Czech IBD Working Group

Number of active members: The Czech IBD Working Group has no official membership, but there are approximately 30 active participants who attend the meetings and participate in group activities.

Number of meetings per year: The group organises three or four meetings per year.

President and Secretary: There is no official president and secretary, but the coordinator of the group is Martin Bortlik.

National Representatives:  Pavel Drastich and Dana Duricova

Joined ECCO in:

The Czech IBD Working Group became a member of ECCO in 2002.

Incidence of IBD in the country: According to an international epidemiological study – the ECCO-EpiCom study – the incidence of IBD in 2010 was 12.7/100,000 inhabitants (5.6 for CD and 5.8 for UC).

Switzerland

Emanuel Burri  © Emanuel Burri

Michel Maillard © Michel Maillard

Name of group: IBDnet (www.ibdnet.ch)

The IBDnet is a Swiss interest group of medical doctors and scientists specialising in Inflammatory Bowel Disease. The aim is the promotion of research and communication on aetiology, diagnosis and therapy in order to improve patient outcomes.

Number of active members: 137

Switzerland has roughly 475 gastroenterologists and hepatologists, 350 of whom are located in the German-speaking part of Switzerland and 125 in the French- and Italian-speaking part.

The IBDnet has 122 members, with a steering committee of 15 IBD specialists.

Number of meetings per year: 

• Steering committee meetings: four per year; one General Assembly per year.
• Education:
  • Educational meetings with credits for HCPs: One or two major (2- or 3-day meetings, postgraduate course) and 10–12 minor (half-day meetings or webinars)
  • Educational meetings for IBD Nurses: Two 1-day meetings
• Expert meetings: The IBDnet holds one or two expert meetings per year to develop Swiss expert opinions for peer-reviewed publication.
• Patient Relations: The IBDnet broadly supports and organises four to six patient events or webinars per year in collaboration with the patient association CCS (Crohn Colitis Switzerland). Most speakers at these patient information events are IBDnet steering committee members. Furthermore, in collaboration with the patient association, IBDnet develops and releases patient information guidebooks.

Meetings in 2020: 17 accredited educational activities (11 webinars for HCPs, three webinars for patients, two 1-day nurse workshops, one 3-day postgraduate course)

President and Secretary: President: Stephan Vavricka, Zurich, Secretary: Nadine Zahnd-Straumann, Zurich

National Representatives: Emanuel Burri, Liestal and Michel H. Maillard, Lausanne

Joined ECCO in: Switzerland was among the founding members of ECCO.

Incidence of IBD in the country: No exact number available. IBD incidence is estimated to be 2 per 1000 persons per year.

Romania

Name of group: Romanian Crohn’s and Colitis Club (RCCC)

Number of active members: 147

Number of meetings per year: 2: one at the National Congress of Gastroenterology and Hepatology and one at the National Symposium of IBD

President and Secretary: Daniela Dobru (President), Maria Ciocirlan (Secretary)

National Representatives:  Mircea Diculescu, Adrian Goldis

Joined ECCO in: 2007

Incidence of IBD in the country: approx. 100/100,000 inhabitants (UC:CD approx. 60:40)

Tuire Ilus © Tuire Ilus

Clas-Göran af Björkesten © Clas-Göran af Björkesten

Finland

Name of group: IBD section of the Finnish Society of Gastroenterology

Number of active members: The Finnish Society of Gastroenterology has 540 members. The IBD section has 30 registered active members.

Number of meetings per year: 2–3

President and Secretary: The Finnish Society of Gastroenterology: Johanna Louhimo (president). The IBD section: Pauliina Molander (president) and Clas-Göran af Björkesten (secretary)

National Representatives: Tuire Ilus and Clas-Göran af Björkesten

Joined ECCO in: 2004

Incidence of IBD in the country: The incidence of IBD in Finland is one of the highest in the world and there has been a significant increase in this incidence during the past 20 years. UC is more common than CD. IBD incidence is 42/100,000 persons per year (UC 31/100,000 and CD 11/100,000).

Spain

Name of group: GETECCU (Spanish IBD Group)

Number of active members: 985

Number of meetings per year: We celebrate one national meeting a year with more than 400 attendees and three annual meetings for residents. We also have a meeting for nurses and a Young GETECCU meeting per year.

President and Secretary: Manuel Barreiro de Acosta and Yamile Zabana Abdo

National Representatives:  Manuel Barreiro de Acosta (President) and Ana Gutierrez Casbas (Vice President)

Joined ECCO in:Manuel Barreiro in 2008 and Ana Gutiérrez in 2019

Incidence of IBD in the country: 16 cases/100.000 persons-years, 7.5 for Crohn´s disease, 8 for Ulcerative Colitis (UC) and 0.5 for unclassified IBD. These data come from our nationwide epidemiologic Spanish Study, EpidemIBD.

Estonia

Name of group: Estonian Society of Gastroenterology

Number of active members: 76

Number of meetings per year: 1

President and Secretary: Riina Salupere, Benno Margus

National Representatives: Karin Kull, Hendrik Laja

Joined ECCO in: 2014

Incidence of IBD in the country: 10,3 (2010)

Dominik Bettenworth  © Dominik Bettenworth

Raja Atreya © Raja Atreya

Germany

Name of group: The “Competence Network IBD (Kompetenznetz Darmerkrankungen)” is the interest group that oversees IBD-related activities in Germany. It incorporates the German IBD Study Group (GISG), which conducts collaborative IBD studies in Germany, the “German work group for Inflammatory Bowel Diseases (DACED), which is the IBD research organisation, the WG Bildgebung, which focusses on imaging-related projects, and the WG Zöliakie, which concentrates on coeliac disease. The “Competence Network IBD” also collaborates with diverse other groups (e.g. FA-CED, which represents IBD study nurses).

Number of active members: The Competence Network IBD comprises more than 700 members while the GISG has more than 170 members. There are 226 ECCO Members in Germany.

Number of meetings per year: There is one annual meeting of the Competence Network IBD that takes place during the yearly meeting of the German Society for Gastroenterology, Digestive and Metabolic Diseases.

President and Secretary: The current chairperson of the Competence Network IBD is Bernd Bokemeyer (Minden).

National Representatives: Raja Atreya, Erlangen and Dominik Bettenworth, Münster.

Joined ECCO in: Germany has been a proud member of ECCO since 2004.

Incidence of IBD in the country: 3–3.9/100,000 in Ulcerative Colitis and 6.6/100,000 in Crohn’s Disease

Catherine Walsh © Catherine Walsh

Ireland

Name of group: The IBD section of the British Society of Gastroenterology (BSG).
Number of active members: 60
Number of meetings per year: 2
President and Secretary: 
Emma Anderson, Chairperson
Aine Keogh, Secretary
Joanne Rae, Assistant Secretary 

National Representatives: Aine Keogh and Cathy Walsh
Joined ECCO in: 2004
Incidence of IBD in the country: Approx. 35,000