I remained in contact with the group, and in 2008, that same young man (by then Chairman of EFCCA until 2016) invited me to join the organization as CEO. Accepting the role marked the beginning of a new and defining phase of my professional journey.
At that time, advocacy within EFCCA was still in its early stages. Together, we agreed on the importance of developing health-related initiatives at the European level, with the aim of equipping EFCCA members with tools, strategies, and examples that could inspire and reinforce their national and regional efforts.
Back then, EFCCA brought together around 20 national associations, all European. Today, we count 46 members worldwide and, just recently, EFCCA has transitioned into IFCCA (International European Federation of Crohn’s & Ulcerative Colitis Associations), reflecting its new international dimension. The organization has become a strong and recognized voice within the global IBD community, enriched by the diversity of its new members. Our ongoing challenge is to ensure we continue to provide meaningful support and adapt effectively to this broader and more complex landscape.
Congratulations to this exciting achievement. Could you tell us more about the specific tasks and mission of IFCCA? In terms of policy-making, how does IFCCA contribute to shaping healthcare decisions?
At IFCCA, our mission is simple yet ambitious: to improve the overall well-being of people living with IBD. While our vision remains to one day find a cure, we know that until that day comes, our responsibility is to make sure patients can live fuller, healthier lives.
Our work is guided by three core values: People, Unity, and Integrity. People are always at the heart of what we do: patients, their families, and the communities around them. Unity reflects our belief that collaboration, both within the patient community and with partners like healthcare professionals, policy makers and other relevant stakeholders, makes us stronger. And Integrity means we act with transparency and responsibility in all our initiatives.
Over the years, IFCCA has evolved into a reference point that brings together patient associations, clinicians, researchers, and policymakers. Our new strategy reflects this growth and focuses on:
- Strengthening our advocacy capacity, so that we can help shape IBD-related policies and ensure better access to diagnostics, treatment, and care worldwide. We are active in EMA, EFPIA and medical societies like ECCO, UEG, ESPGHAN.
- Placing patients at the centre of research and development, because innovation only truly serves its purpose when it reflects the real needs and experiences of those living with IBD. We are currently involved as members of the consortia of 11 EU funded research projects (Horizon and IHI), including PerPrevCID, INTERCEPT, miGut-Health, ImmUniverse, METHYLOMIC, IDEA-FAST and GENEGUT.
- Empowering our delegates and the wider IBD community, giving them the knowledge and tools to advocate more effectively at national, regional, and international levels. Among the many, it is worth mentioning our Academy, an online university addressed to our members, offering a wide range of subjects and courses, including topics arising from the EU projects in which we are involved.
In short, IFCCA acts as both a voice and a bridge, connecting patients with each other, and with healthcare professionals, policymakers, researchers and industry. By working together, we can make sure that progress in science, healthcare systems, and policy is grounded in what matters most: improving the daily lives of people with IBD.
As you mentioned, IFCCA is involved in several scientific projects. How does meaningful patient participation work in practice?
In recent years, patient participation in EU research projects has moved far beyond being a formal requirement. It is now recognized as a key factor in improving both the design and the outcomes of studies. Patients bring the lived experience that makes research more relevant and impactful.
As several publications (such as Saldaña et al., 2023) have shown, there are several practical ways this involvement happens. For instance, patients use tools such as ePROVIDE and the GRIPP2 checklist to review and optimize clinical trial protocols, helping to ensure the research reflects what really matters in day-to-day life with IBD. Platforms like EuroCAB and EUPATI also provide spaces for early and structured dialogue between patients and researchers, so patient perspectives are included right from the start.
Patients are also increasingly involved in health technology assessment processes. This includes the identification and prioritization of technologies to evaluate, the contribution to research goals, and even participation in decision-making.
This kind of collaboration ensures that research outcomes are not only scientifically sound but also grounded in real-world patient needs, making them more useful for clinical practice and ultimately more meaningful for the people living with IBD.
From your perspective, what can the IBD research community (particularly young trainees) learn from the work of patient associations?
From my perspective, one of the most valuable lessons the IBD research community can learn from patient associations is the importance of seeing research through the eyes of people living with the condition. Patients consistently point out gaps that may not always be obvious in a traditional research agenda.
For example, many patients share worries about surgery or the possibility of needing an ostomy, and they want clearer information about how quickly their medications will work, how effective they will be, and what the long-term consequences might look like. These are very real concerns that shape daily life, yet they’re not always reflected in research priorities.
Beyond the clinical aspects, patients also stress the need for stronger psychological support and better communication with healthcare providers, particularly when it comes to coping with the emotional and mental health impact of IBD. Quality of life, the ability to achieve long-term remission, and reducing issues like urgency are just as important to patients as the biomedical outcomes we often focus on in trials.
Another key area where patient voices add value is in the call for more personalized treatment strategies. Patients want research that helps predict who will respond to which therapies and how to best sequence those therapies over time to improve both health outcomes and quality of life.
For trainees, I think the takeaway is this: by engaging with patient associations and listening to the concerns they raise, researchers can design studies that not only advance science but also truly address what matters most in the lives of people with IBD. That alignment is where research can have its greatest impact.
Let’s now talk a bit about AI, which is currently in the focus in almost any fields of research and society. AI is often described as a transformative force in healthcare, but it also raises concerns. What is the general sentiment among patient communities regarding the use of AI in IBD care?
From what we hear in the IBD patient community I represent, the general feeling about AI in IBD care is one of cautious optimism. There’s a clear recognition that AI could be a game-changer in terms of helping with earlier and more accurate diagnosis, predicting risks, supporting shared decision-making, and ultimately moving us closer to truly personalized medicine. Patients see the potential for AI to bring more clarity and precision into what can often feel like an uncertain journey.
At the same time, there are very real concerns that need to be acknowledged. Patients want to know that their data is secure, used ethically, and handled responsibly. There’s also awareness that AI is only as good as the data it’s trained on, which raises questions about bias and whether all patient populations are being represented fairly. Without that diversity, there’s a risk that some groups could be left behind.
So while patients are hopeful about what AI might bring, they also want reassurance that it will be developed and implemented in a way that is transparent, ethical, and inclusive. I think the key takeaway is that patients are open to innovation, but they want to be sure it genuinely improves care and respects their trust.
How do you envision the future relationship between patients and their IBD healthcare providers?
I believe the future relationship between patients and their IBD healthcare providers will become much more of a partnership. Patients are increasingly well-informed, and they want to be active participants in decisions about their care rather than passive recipients. This doesn’t mean challenging clinical expertise. It means combining medical knowledge with lived experience to arrive at the best possible choices together.
We already see this shift happening through shared decision-making, where conversations go beyond treatment options to include what those options mean for a patient’s quality of life, mental health, and daily routines. Over time, I think this approach will only deepen, supported by better communication tools, digital health solutions, and possibly AI-driven insights that can bring more clarity to complex decisions.
For healthcare providers, the opportunity lies in recognizing patients as experts in their own lives. When clinicians bring their medical expertise and patients bring their lived experience, the result is a more complete picture of IBD care. That kind of collaboration not only builds trust but also leads to treatment plans that are more sustainable and meaningful for patients.
My hope is that the future relationship will be less hierarchical and more collaborative: A true partnership where both perspectives are valued and combined to improve outcomes and quality of life.
Lastly, what does Luisa enjoy doing in her private life?
I don’t have a lot of free time, so I try to make the most of it with family. Friends, and my cat Zeus. I love traveling (Africa is my favourite) and I enjoy exploring off-the-beaten-path places, connecting with local communities, and learning from their ways of life. Traveling by motorbike and camping really makes me feel connected to the world around me.
I’m also passionate about music and dancing. And being Italian, food is close to my heart. I love cooking and sharing a good meal and wine with friends and family.
Thank you so much, Luisa, for taking the time to speak with me. Your insights were incredibly valuable and truly appreciated.
