Awareness Raising

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 year’s World IBD Day. With seven fellow IBD patients, we thought of our job hunts and careers, how IBD has or has not affected our working lives, and what advice we could give to others who have IBD.

Read time: 5 mins

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 IBD 2019! Watch the video to see the hidden costs of IBD on our society in particular on children.

 

Read time: 1 min

The impact of perianal fistula in Crohn’s disease on quality of life

The impact of perianal fistula in Crohn’s disease on quality of life: results of a patient survey conducted in Europe

May, 2021

Perianal fistulas (PAF) in Crohn’s disease (CD) may impair social performance, sexual function, life activities and overall patients’ quality of life (QoL). Patient experience is important in the treatment decision making and in providing adequate support. Despite the clinical relevance, few studies have addressed the patient perspective on the impact of PAF and complex PAF (CPAF) in CD on QoL. 

Read time: 1 min

My IBD Journey - animation series

EFCCA has been involved in an exciting project aimed at helping people to ‘live well’ with IBD. We have developed a series of animation videos that will equip people with practical advice and relevant information and hopefully will bring about positive changes to the way they cope with their disease. The topics are as follows:

Read time: 4 mins

World IBD Day 2019

EFCCA together with its 36 IBD patient associations, worldwide IBD sister organisations and supporters raised IBD awareness on 19 May by highlighting famous landmarks in the colour of purple alongside the organisation of local events. The theme for this year was  "Making the invisible visible" which is about showing different aspects about IBD that are not "visible" to the public.
 
To download social media graphics for this campaign please follow the links:
Read time: 1 min

Conjugal inflammatory bowel disease

Conjugal inflammatory bowel disease: a systematic review and European survey

February, 2021

The frequency of inflammatory bowel disease (IBD) is increased after marriage to an individual with the disease. Importantly, the offspring of these couples have a significant risk for developing the disease. Herein, the study  aimed to better characterise conjugal IBD.

Read Study 

Read time: 1 min

Patient Preferences

There is very little scientific evidence on patient preference targeted at the IBD patient community. This is why EFCCA decided to embark on this project which started in 2020 with an in-depth literature review and a cooperation agreement with KU Leuven university (Belgium). KU Leuven had already run a country level survey on IBD patient preferences which,  together with other similar studies on other disease areas,  has become the starting point of our multi-annual project.

Read time: 2 mins