EFCCA Magazine - 3/2020

We are pleased to publish our latest issue of the EFCCA Magazine. In this edition you will find a special focus on how COVID-19 has impacted on the IBD community. You will also find inspiring stories from our members and other stakeholders. Thanks for your contributions and happy reading!
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EFCCA Patient Talk No2

COVID-19 psycho-social impact of lockdown in patients with IBD Watch the video   “How did the IBD patient community cope with the lockdown?”, “Which is the real meaning of isolation for a person living with IBD?”, “What is really back to normal meaning? “Which role did the patient associations...
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Clinical Trials Training

EFCCA Academy 2020 - Training Certified Patient Experts We are pleased to announce our new edition of the EFCCA Academy offering specialized training for IBD patients.   The EFCCA Academy was created in 2018 following the results of several major surveys that highlighted the main unmet needs of the...
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SECURE IBD

Coronavirus and IBD Reporting Registry! Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE-IBD) is an international, pediatric and adult registry to monitor and report on outcomes of COVID-19 occurring in IBD patients. https://covidibd.org/
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Results of COVID-19 IBD patients' perception

The results of the survey are now available. The current state of emergency related to the coronavirus (COVID-19) pandemic represents a difficult period for both patients and doctors, as we face a new enemy, of which little or nothing is known, and which requires everyone's collaboration to...
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COVID-19

Many people especially those with chronic diseases such as IBD and/or who are taking  immunosuppressant medications migth be concerned about the novel Coronavirus 2019 (COVID-19).  Below we have compiled information and guidance for this new virus from ECCO, EMA, IBD sister organisations available ...
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Welcome to EFCCA

Improving the life of people with Inflammatory Bowel Disease (IBD)

The European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA)  is an umbrella organisation representing 41 national Crohn’s and Ulcerative Colitis (collectively known as IBD)  patient associations.  We are an organization of people united in our commitment to improve the life of over 10 million people living with IBD worldwide (3.4 million in Europe alone) and to give them a louder voice and more visibility.

 

Projects Highlights

HCP Training on Biosimilars

Start date: 09/2020
Status: Active
EFCCA has been collaborating with Medscape on a training session about  biosimilars and the patients' perspective which is addressed to Healthcare providers. The training session includes a video...
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ImmUniverse Horizon 2020

Start date: 08/2019
Status: Active
EFCCA is involved in an exciting EU Research Project under the Innovative Medicines Initiative (IMI 2) (Horizon 2020). The ImmUinverse project main goal is the improved diagnostic and therapeutic...
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EFCCA Academy

Start date: 06/2018
Status: Active
NEW: EFCCA Academy 2020 edition    FCCA Academy - Training Certified Patient Experts EFCCA is embarking on an exciting new project under the title "EFCCA Academy- Training Certified Patient Experts...
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My IBD Journey - animation series

Start date: 07/2016
Status: Active
EFCCA is involved in an exciting project aimed at helping people to ‘live well’ with IBD. We are developing a series of animation videos that will equip people with practical advice and relevant...
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Innovative medicines - Mapping project

Start date: 07/2016
Status: Concluded
Innovative medicines - EU mapping project The objective of this project is to reduce health inequalities in Europe through an exhaustive mapping of all innovative treatments and devices available in...
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Patient Safety: Biologics and Biosimilars

Start date: 10/2014
Status: Active
In the last two years the issue on biologics and biosimilars has received a lot of attention from the medical, regulatory and patient community. Licensing rights of biological medicines used in the...
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What's New

OPTIMISE Study

Status: Active Start date: 09/2020
Is there a better way to optimise disease control for patients with ulcerative colitis? A new study aims to find out Achieving and maintaining effective control of ulcerative colitis is the goal of...
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ImmUniverse Website Launch

EFCCA is partner in an exciting #Horizon2020 project called ImmUniverse aimed at improving diagnostic and therapeutic options for patients living with #ulcerativecolitis and #atopicdermatitis. Go and...
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COVID-19, IBD and mental health

One effect of the COVID-19 pandemic which is given less importance in the media coverage is the effect it has on people´s mental health. Fears and worries are normal responses to any real or...
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10 TIPS FOR MAKING IBD WORK FOR YOU AT WORK

10 TIPS FOR MAKING IBD WORK FOR YOU AT WORK by Sanna Lönnfors, EFCCA Research and Project Coordinator I recently participated in an online focus group on the topic of Work and IBD, the theme of this...
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Work and IBD

Watch Jacek´s story of Work and IBD as part of EFCCA´s campaign for World IBD Day 2020. #makeIBDwork #worldibdday2020
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EFCCA Symposium

EFCCA organised a symposium on “Digital Health and Data: IBD patients´ view and perspectives”  which took place during the ECCO Congress on 14 February 2020 from 14-15h in Vienna, Austria. This was...
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Yellowstone Program Study

Status: Active Start date: 01/2020
The Yellowstone Crohn’s Disease Clinical Research Program The YELLOWSTONE Program is a series of Phase 3 clinical studies for people with moderately to severely active Crohn’s disease. These studies...
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Inflammatory Bowel Disease and the Effects of Tobacco/Nicotine Use

There is little patient-centered research aimed at assessing patients' perceived impact of smoking or nicotine use on their Inflammatory Bowel Disease (IBD). Therefore, EFCCA is supporting a survey ...
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Manual for Teachers

We would like to share a useful publication prepared by Fundeccu Argentina. This guidebook is aimed at teachers to be better informed and prepared about students with chronic conditions such as #...
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The Impact of Perianal Fistulae on a Crohn’s Disease Patient’s Quality of Life

EFCCA is embarking on exciting new research with Takeda to find out the impact of complex perianal fistulae on quality of life from Crohn’s disease patients’ perspective. Crohn’s disease patients...
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EFCCA Strategy Plan 2019-2022

The EFCCA Strategy Plan for the period of 2019-2022 provides direction to our member associations and informs stakeholders of EFCCA’s Vision, Mission, Values and the Priority areas EFCCA intends to...
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The relationship between Your Gut and Your Brain

Presentation made by Dr Yoram Inspector, St. Mark’s Hospital - London, UK during the EFCCA General Assembly, 25 May 2019.
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New EFCCA Executive Board

The EFCCA Executive Board as elected during our GA 2019 on 25 May 2019 in Prague.  From left to right: Martin Mastrotto (on behalf of the EFCCA Youth Group during this GA), Natasa Theodosiou, Ciara...
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Nutrition and Chronic Digestive Diseases: An Action Plan for Europe

The United European Gastroenterology has launched a report on "Nutrition and Chronic Digestive Diseases: An Action Plan for Europe" to which EFCCA amongst other organisations has contributed. Follow...
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The Indirect Costs of IBD

New survey on the indirect costs of IBD. The aim of the study is to assess the influence of IBD on the patients productivity at work and relevant costs for society. www.ibdcosts.eu Within the...
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Making the Invisible Visible

EFCCA is collaborating with the European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) by promoting the study " The Indirect Costs of IBD" to raise awareness for World...
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Surgery in IBD

There are some topics that are hard to discuss, for which people may not want to share their opinions.  Surgery in people with Inflammatory Bowel Disease (IBD) is one of these neglected topics. It is...
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Open Call for Patient Input – Joint Assessment on a medicinal product for UC.

EUnetHTA deems patient involvement very important in the production of Joint Assessment reports. We recognise that patients and those who support them have unique knowledge about what it is like to...
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IBD awareness week Serbia

We are pleased to share a video that our member in Serbia Udruzenje Ukuks has produced In cooperation with Dr. Zoran Milenkovic for the occasion of #BDawareness week that is taking place in Serbia....
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Independent Grants for Learning & Change

The pharmaceutical company, Pfizer, has launched a call for proposal within the framework of the "Independent Grants for Learning & Change". The call is for proposals on "Appropriate...
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Pouch surgery

"Considering whether to have ileal pouch surgery" is a booklet for ulcerative colitis patients which was recently made in a joint effort between Dr Andrew McCombie, Crohn ́s and Colitis New Zealand (...
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Camp Purple Live 2018

By : New Zealand - The Crohn’s and Colitis New Zealand Charitable Trust (New Zealand)
Watch the video from the Camp Purple Live 2018 ! Our colleagues in New Zealnad, Crohn's and Colitis NZ have just completed their summer camp for 60 children and teens. Camp Purple Live provides an...
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European Commission publication on Biosimilars

The European Commission has published translations of comprehensive information for patients on biosimilar medicines. It contains questions and answers on biosimilar medicines and is now available in...
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Pharmacovigilance in the EU

This book is open access under a CC BY 4.0 license.   The book presents the results of an in-depth comparative study assessing the implementation of the EU Pharmacovigilance Directive in six EU...
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Report from Nutrition Conference

The report from the ¨Optimal nutritional care for all¨conference is now available for download. The conference was organised by the European Nutrition for Health Alliance’s (ENHA) Optimal nutritional...
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"IBD and Me" Teenage Transition Website

By : New Zealand - The Crohn’s and Colitis New Zealand Charitable Trust (New Zealand)
‘IBD and Me’ Teenage Transition Website The transition from paediatric to adult care for young people living with IBD is ideally a staged process where young adults are gradually integrated into...
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Interview with Gediminas Smaily

Interview with Gediminas Smaily from the Lithuanian IBD patient association during the EFCCA General Assembly.
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The IBD Journey

The video ¨The IBD Journey¨ highlights the need for multi-disciplinary care in treating IBD, from a range of healthcare providers and carers, including doctors, nurses, psychologists and...
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EFCCA Magazine Issue 2/2017

We proudly present the second issue of the EFCCA Magazine 2017. In this edition you will find a wide range of information about World IBD Day, EFCCA activities, the EFCCA Youth Group, member news and...
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Medical devices: more safety, more traceability

Stricter rules to ensure that medical devices such as breast or hip implants are traceable and comply with EU patient safety requirements were backed by MEPs on Wednesday. MEPs also approved laws to...
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MEPs propose ways to make medicines more affordable

New medicine prices in the EU have risen over the past few decades, to the point of being unaffordable for many EU citizens and threatening the sustainability of national health care systems.  To...
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Patient Advocacy and Safety Conference

On 15th November 2016, more than 70 patient advocates and physicians from across the European Union attended the Patient Advocacy and Safety conference at the European Parliament in Brussels, Belgium...
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What you need to know about biosimilar medicines

The European Commission DG for Internal Market, Industry, Entrepreneurship and SMEs, have published  6 new language versions of the patient information document "What you need to know about...
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Life after IBD diagnosis

For many people, diagnosis with inflammatory bowel disease (IBD) can be an overwhelming and confusing time. Not just for the person with the condition, but also for those who are close to them. Being...
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Artificial Nutrition

PACIFHAN assists people travelling with Home Artificial Nutrition “To travel is to live” Hans Christian Andersen Imagine having a complex medical condition and treatment that enables you to live but...
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Symposium on Innovations in Gastroenterology

We are pleased to announce a new initiative, "Innovations in Gastroenterology, 2017 Symposium” to be held in Tel Aviv, January 4-6, 2017. This will be an exclusive event where gastroenterologists,...
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Patient Safety Conference - European Parliament

Patient representatives participate in open debate on patient safety issues and right to information at the European Parliament Brussels, 15 November 2016.  The European Federation of Crohn's &...
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Transition care in IBD

EFCCA CEO,  Luisa Avedano, participated at the press conference on Paediatric Digestive Health during the UEG Week in Vienna on 17 October 2016. She presented the Transition to Adult Care project...
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"From Health System Sustainability To Promoting Inclusive Growth" - Conference Report

The Lithuanian Health Forum Conference held in Vilnius was organised to consolidate and address the policies, goals, and objectives of the Vilnius Declaration’s “Sustainable Health Systems for...
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EFCCA Magazine 3/2016

The third issue of the EFCCA Magazine 2016 is now available online. We hope you enjoy reading about our latest activities, news from our members and other interesting articles related to IBD such as...
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Executive Summary - Patient Advocacy Workshop

This is the Executive Summary of the Patient Advocacy Workshop on Patient Safety which took place in Barcelona from 4-6 February 2016 and gathered over 60 patient representatives from a wide range of...
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IPODD ... EU research project on IBD

The EU project IPODD takes a pragmatic approach to IBDs by focusing on the final stages of gut damage. Sergio Pistoi, IPODD Public Information Officer* If criminals were behind inflammatory bowel...
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Survey on IBD patients' perception of Surgery

An international online survey promoted by the European Federation Of Crohn’s And Ulcerative Colitis Associations (EFCCA) with the Scientific Support of and international team of experts led by...
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Commisioner Borg Video

Commissioner Borgh addressing EFCCA General Assembly Commissioner Borgh from the European Commission´s Directorate for Health and Consumers welcomed delegates to the  24 General Assembly of EFCCA...
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EFCCA article published in Journal of Crohn´s and Colitis

Results of the EFCCA led IMPACT survey have been published in the latest issue of the Journal Crohn´s and Colitis. In the article entitled "IBD and health-related quality of life- Discovering the...
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Tecniche diagnostiche per il morbo di Crohn

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Inflammatory Bowel Disease (IBD)

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World Symposium on IBD Research

World Symposium on IBD Research funded by IBD patients associations Global alliance against IBD   On 18 October 2012,  the European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA...
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Latest multimedia

World IBD Day 2020

By : Italy - AMICI - Associazione per le malattie infiammatorie croniche dell’ intestino
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Work and IBD

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The relationship between Your Gut and Your Brain

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International Symposium on IBD Research 2018

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EFCCA General Assembly 2018

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Camp Purple Live 2018

By : New Zealand - The Crohn’s and Colitis New Zealand Charitable Trust (New Zealand)
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Interview with Gediminas Smaily

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EFCCA General Assembly 2017

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Social programme AGM 2017

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Jason´s story

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Living with IBD

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Concetta´s Story

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Jason´s story

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Maria´s Story

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Sami´s Story

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Stephanie´s Story

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Brussels half marathon 2016 World IBD Day 2016

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EFCCA General Assembly 2016

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World IBD Day 2016

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ECCO-EFCCA Patient Guidelines - Martin Kojinkov interview

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Brussels half marathon 2015 - Interviews

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EFCCA General Assembly 2015

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Brussels half marathon 2015 World IBD Day 2015

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Symposium on biologic and biosimilar

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World IBD Day 2015 video playlist

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Brussels half marathon World IBD Day 2014

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EFCCA General Assembly 2014

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Commisioner Borg Video

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From EU citizenship to IBD-zenship 2013

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European Parliament Bruxelles May 16 2013

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EFCCA General Assembly 2013

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Join the fight against IBD 2013

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Join the fight against IBD 2013

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Short summary of the Join the Fight Press conference

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EFCCA and World IBD Day 2013

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Tecniche diagnostiche per il morbo di Crohn

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Inflammatory Bowel Disease (IBD)

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World Symposium on IBD Research

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World IBD Day 2012

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Join the fight against IBD Video

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Join the fight against IBD Event Video

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EFCCA and World IBD Day 2012

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Anaemia Video

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The impact of IBD

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