IFCCA Academy
The IFCCA Academy is a flagship initiative aimed at empowering individuals with Inflammatory Bowel Disease (IBD). It provides specialised training to enhance awareness on specific topics and fosters advocacy within the IBD patient community. Graduates of the Academy are equipped to serve as trainers within their local communities, amplifying the reach and impact of the program.
Horizon Europe
IFCCA Academy
The Horizon Europe IFCCA Academy is a new online learning initiative that connects IBD patients with the latest scientific developments from Horizon Europe research projects.
These accessible and interactive modules are tailored for patients and will explore advanced treatments, innovations, and practical strategies to improve life with IBD. The Academy is open to all members of IFCCA’s national associations who are IBD patients (18+), with materials provided in English and a flexible online format.
Registration for the Module 2 is now open.
For further information, please contact Maria Stella De Rocchis.
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The first training module “Advanced Therapies and RNA-based Medicines”, is focused on the groundbreaking GENEGUT Project. You’ll find a 19-minute video class presented by the project’s Coordinator, Prof. Caitriona M. O'Driscoll. She will take you through the development of a non-invasive, safe, effective, and targeted treatment—a first-in-class, orally administered RNA-based therapy that aims to revolutionise the treatment of IBD.
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Clinical Trials Academy
In 2020–2021, we developed a set of engaging and easy-to-follow training modules focusing on clinical trials. These studies play a crucial role in finding new treatments and better ways to detect and diagnose diseases. Despite their importance, not many patients take part in them.
Research shows that many people—including patients—have little knowledge or understanding about what clinical trials are and how they work. This includes even those who are already part of a trial.
One of the main reasons is that information about clinical trials is often confusing, too technical, or hard to find. People may struggle to get clear and trustworthy information. Other common concerns include how to access trial sites, worries about safety, and the fear of being placed in a placebo group.
Our Academy training modules were created to help clear up these concerns and to provide practical, easy-to-understand guidance for anyone interested in learning more about clinical trials.
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18 November 2020 via the EFCCA online learning platform
The first module “Clinical trials: basics” took place online on 18 November 2020. Professors Séverine Vermeire and Marc Ferrante from the Department of Gastroenterology and Hepatology, University Hospitals Leuven / KU Leuven in Belgium provided basic information on the different phases in the development of medicines, the revolution in IBD treatment over the years, the efficacy of clinical trials and the safety also in the real-world after drug approval. Upon completion of all training modules the Certified Patients shared their knowledge among IBD communities in their countries, teach member association representatives on the subject and also played an active role with regards to cooperation with pharmaceutical companies at national level.
This first class was attended by 15 IBD patients from 12 countries: Belgium, Bulgaria, Estonia, France, Greece, Israel, Italy, Mexico, Poland, Portugal, Singapore and Spain.
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17 December 2020 via the EFCCA online learning platform
The second module (17 December 2020) “Diving deeper into clinical trials” gave students insights into all the players involved in clinical studies including aspects such as patient education and patients’ role within these trials. Speakers included:
Ana Sofia Correia, a clinical translator specialized in the linguistic validation of Patient-Reported Outcomes, an explained about Patient-Reported Outcomes and Real-World Evidence, why PROs and RWE are so important and how PROs and RWE are collected.
Rob Camp, Senior Manager for Patient Engagement focused on CABs at EURORDIS talked about Patient Engagement in clinical trials, Community Advisory Boards, Patient education as part of the Community Advisory Board process or as stand-alone (i.e., Train-the-Trainer).
Annick de Bruin, Senior Director of Research Services at the Center for Information and Study on Clinical Research Participation (CISCRP) explained why a clinical trial is not the same as standard of care, the difference between the sponsor and the research team, what are eligibility criteria and how to be prepared before participation in a clinical trial.
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25 January 2021 via the EFCCA online learning platform
The last module took place on 21 January under the title “Breaking the myths around clinical trials”. A lecturer by Prof. Ariel Liebert from the Department of Gastroenterology and Nutrition Disorders, Nicolaus Copernicus University in Toruń (Poland) dealt with Clinical trials guidelines, benefits and risks related to participation, medical care in progress, participant’s insurance, and what to ask before making a decision to join a trial. This was followed by an interactive discussion on how industry is interacting with different stakeholders as part of the drug development process. For this purpose, representatives from Roche provided an insight of the different roles and functions of industries in these trials. The training saw the active participation of 15 students from different countries. They will now proceed to work on a thesis in order to complete their training. For more information please contact Maria Stella De Rocchis, EFCCA European Project Manager.
THIRD MODULE
This training programme has been supported by an unrestricted grant from the following sponsors:
Youth Academy:
Empowering young IBD representatives
We launched our Youth Academy addressed to young IBD patients (aged between 18 and 30) with the aim to increase the representativeness of the youth group, create a cohesive group of leaders of tomorrow and to empower young representatives.
The training programme was launched in November 2021 via the EFCCA's online learning platform and was attended by 14 students.
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In the first training module our CEO, Luisa Avedano, and Deputy Director, Isabella Haaf, kicked off the programme with a module called “The history of EFCCA, its mission, values, and strategic priorities.” With this first module we wanted to bring the ins and outs of EFCCA closer to our young representatives.
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In the second training module students heard from Marco Greco, President of the European Patients’ Forum since 2014, EFCCA chairman from 2008 to 2014, founder of the EFCCA Youth Group, and its leader from 2003 till 2007 as well as from Daniel Sundstein, EFCCA Youth Leader from 2021 to 2015, EYG board member (2009-2016) and EFCCA Board member (2012-2015). They talked about the journey that led to the creation of the youth group in about 50 rapid-fire questions!
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In the third module Clara Drammeh discussed “The foundations for the democratic and harmonious development of second-level associations”, teaching subjects like good governance, youth empowerment and strategic thinking and planning. Clara is a dedicated scout and youth advocate; she is experienced with facilitation in civil society contexts and non-formal education. She is also part of the pool of experts of the European Youth Forum, which is the platform of youth organisations in Europe representing over 100 youth organisations, which bring together tens of millions of young people from all over Europe.
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In the final training module called “Team building and leadership shaping: the basics”, Clara again talked about “Community Building and Leadership, Advocacy and Lobbying and Project Management”, Isabella Haaf gave an overview on the role of communication and how to be effective, and to conclude, Andrea Broggi, EFCCA Legal consultant, taught students why and how a patient organisation should be accountable and transparent to stakeholders.
After completing the training, students were asked to perform a final work.
We added two new end-of-course work assignments from the IFCCA Youth Academy for 2023 on our website! Check out the insightful projects completed by our talented students:
Youth Engagement in IBD: HELLESCC Involving Initiatives, by Rafaela Vakouftsi (Hellescc, Greece)
IBD Summer Camp, by Jasneel Deo (Crohn's & Colitis New Zealand)
EFCCA Summer Camp Plan 2024, by Sāra Zdanovska (LKKSB, Latvia)
Embracing Inclusivity: Navigating the Future of EFCCA Youth Events Through Hybrid Experiences, by Francesca Russo (Crohn's & Colitis UK)
For more information, please write to Maria Stella De Rocchis mariastella.derocchis@efcca.org
Empowerment Academy: Everything You Need to Know About IFCCA
We launched our IFCCA Empowerment Academy, a training programme tailored for recent IFCCA members designed to offer deeper insights into the organisation.
The programme provides participants with a global learning journey led by IFCCA staff and other experts. Encompassing subjects like law, corporate governance, organisational history or ethics, it guarantees a comprehensive comprehension of crucial aspects of our federation. The course culminates in an extensive assessment to gauge participants' proficiency and understanding of the covered subjects
The training programme was launched in January 2024 and consists of 5 modules.
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Led by Giulia Mauri, an expert adviser in corporate and commercial law. Throughout the module, Mauri explains the not-for-profit sector in Belgium, focusing on the concept of AISBL (Association Internationale Sans But Lucratif). She also covers the roles and responsibilities of the general assembly and members, as well as the board of directors and the CEO within the context of an AISBL's articles of association.
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Taught by IFCCA's CEO Luisa Avedano and Head of Communications Isabella Haaf. The module delves into IFCCA's historical evolution, purpose and goals, structure, and decision-making bodies. It also reveals the membership procedure and IFCCA's collaborative network.
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Taught by Andrea Broggi, an attorney with over 15 years of professional experience in international law and human rights. The module focuses on understanding why patient organisations should prioritize ethics, who is accountable for maintaining ethical standards, and how to promote these principles. The module also delves into the importance of transparency and its role in a real-world setting.
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Taught by IFCCA Head of Communications Isabella Haaf, IFCCA's Project Officer Maria Stella De Rocchis, and Innovation and Patient Engagement Coordinator Roberto Saldaña. The module provides in-depth insights into the practical implementation of the three pillars of IFCCA's mission: Awareness Raising, Empowerment, and Research & Development, through various projects and activities.
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Taught by Andrea Broggi, covers IFCCA's key strategies that can help students significantly improve the operations of their patient associations.
Every module includes a knowledge-check activity to ensure the student comprehends the contents and can proceed to the subsequent module.
For more information, please write to Maria Stella De Rocchis at: mariastella.derocchis@efcca.org
DIVA Academy:
Unlocking the Power of Data Insights for Added Therapeutic Value
In May we launched a new online training programme: “DIVA Academy: Unlocking the Power of Data Insights for Added Therapeutic Value”.
DIVA (Data Insights for added therapeutic VAlue) is a powerful IFCCA working methodology that allows IFCCA members to explore patients’ unmet needs based on scientific data and to propose new initiatives and campaigns to find meaningful solutions.
DIVA Academy has been shaped to provide a hands-on learning experience, empowering you to navigate DIVA's features, functionalities, and research filters efficiently.
Throughout the training, it will be possible to gain a deep understanding of DIVA's capabilities and learn how to use them in different real-life scenarios in which patient representatives deal with in their daily lives.
The programme includes three modules, designed to improve your skills and knowledge. They will be delivered sequentially, so participants will have access to one module at a time.
IFCCA believes in the great value of this transformative journey as the DIVA Academy can unlock the power of data, drive positive changes, and improve outcomes for our IBD community!
For more information, please write to Maria Stella De Rocchis at: mariastella.derocchis@efcca.org