Empowering Patient Voices in Health Technology Assessment

On 6 February 2025, EFCCA brought together top researchers, industry experts and patient advocates for a webinar on intestinal fibrosis in IBD—an issue that too often gets overlooked. This session was part of the FIBROTARGET project (Horizon Europe), which is working to improve the prevention, diagnosis, and treatment of fibrosis and fibrostenosis in IBD.

EFCCA’s commitment to bridging patient needs and policy expectations

Patient Engagement in Health Technology Assessment (HTA) is a cornerstone initiative for EFCCA, designed to bridge the gap between the real needs of patients and the expectations of regulatory authorities. By fostering a more structured and informed approach to EFCCA’s contributions, this initiative enhances the impact of patient participation in the evaluation of medicines and medical devices. The aim is to promote a more inclusive HTA process while encouraging innovation and research in Inflammatory Bowel Disease (IBD).

Empowering Patient Voices in Health Technology Assessment

This year the central theme for World IBD Day is "IBD Has No Borders", emphasising the global nature of IBD and the need for collective action. EFCCA organised a Round Table discussion titled "Uniting for access to IBD care" on 17 May 2024 in Mexico City. 

We launched our EFCCA Empowerment Academy, a training programme tailored for recent EFCCA members designed to offer deeper insights into the organisation.

IBD HAS NO AGE is an EFCCA campaign started in 2022 in order to raise awareness of how Inflammatory Bowel Disease (IBD) is impacting on the life of people aged 60 years and over. This year, for World IBD Day 2023 (19 May), we are launching a survey on people with IBD aged 60 years and over to investigate more on this topic with questions related to both quality of care and quality of life. 

The European Crohn’s and Colitis Organisation [ECCO] produces and regularly updates several guidelines to provide evidence-based guidance on critical aspects of IBD care to all health care professionals who manage patients with IBD. 

Transitioning through paediatric and into adult care is a critical time for patients and, if not carried out effectively and appropriately, can impact on education, mental health and patient outcomes. It has become clear that this is a major issue for patients, their carers and clinicians and that the transition process within and across Europe urgently needs reform.

Fatigue is an important underecognized clinical problem in patients with IBD and one of the most frequently reported concerns of patients. It affects nearly 50 % of patients in clinical remission and 80% of those with active disease, resulting in a decrease in quality of life and impaired work productivity and functioning.

This year, for World IBD Day 2022, EFCCA would like to raise awareness about the impact IBD has on elderly people. Under the slogan IBD has no age we want to put the focus on elderly people (60 plus) and see how living with Crohn´s disease and Ulcerative Colitis (collectively known as Inflammatory Bowel Disease) is impacting on their quality of life and care. 

The educational forum on biologics took place on 2 December 2021 from 17 to 19h Central European Time.

Our latest EFCCA Patient Talk "The impact of perianal fistula in Crohn´s disease on quality of life" took place on 9 September 2021 from 6-7 Central European Time.

Families First is a global survey aimed at 1st degree relatives of IBD patients on preferences and fears for prediction & prevention interventions.

This year, for World IBD Day, EFCCA would like to promote the discussion on IBD and wellbeing.

With our awareness raising campaign we want to start a dialogue and discussions on the psychological impact of the disease. Through a social media awareness raising campaign leading up to 19 May we want to show the hidden facts about what it is like to live with IBD. Under the hashtag #breakthesilence we want to show the world how a person with IBD really feels.

As part of the EFCCA Patient Talks series, we organised our latest EFCCA Patient Talk which took place on Friday 5 February 2021 from 4.30 to 5.30 pm (CET) at our EFCCA Facebook

Within the framework of our EFCCA Patient Talk series we are pleased to announce our next Patient Talk to take place on Friday 27 November 2020 from 3-4 pm. It will look at the topic of Seasonal vaccines and IBD following a survey that EFCCA had carried out amongst its members concerning the availability and practise of seasonal vaccines during our current pandemic.

COVID-19 psycho-social impact of lockdown in patients with IBD

“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 play in the lockdown”?

“Will I be able to access my biologics/biosimilars treatment?”, “Will my other IBD medicines be affected by COVID-19?”, “Are costs of my medicines likely to rise?”

The global impact of COVID-19 has been overwhelming and without pause, accelerating at lightning speed, changing our lives and our way of seeing the world.

3.4 million people in Europe (10 million worldwide) live with Crohn's Disease or Ulcerative Colitis (also known as Inflammatory Bowel Disease - IBD). With IBD on the rise and mainly affecting young people of working age the European Federation of Crohn´s and Ulcerative Colitis Association (EFCCA) has decided to focus this year´s World IBD Day efforts on Work and IBD.  

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.

The EFCCA Annual General Meeting took place in Prague from 24-26 May 2019 bringing together nearly 60 delegates from 31 patient associations. The event was hosted by our colleagues from Pacienti IBD (Czech Republic). In the coming days we will make available several of the presentations and other materialdn of the GA.

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.

EFCCA´s second Symposium on IBD Research funded by patients brought  together over 80 representatives from patients groups from 5 continents, gastroenterologists and other healthcare providers as well as relevant stakeholders in order to reinforce patients’ role and voice in research.

World IBD Day takes place on 19 May each year and unites people in their fight against Crohn's disease and ulcerative colitis, known as inflammatory bowel diseases (IBD).

Survey on the indirect costs of IBD
The aim of the study was to assess the influence of IBD on the patients productivity at work and relevant costs for society.