EFCCA Academy

One of our flagship activities in terms of patient empowerment is the EFCCA Academy. The Academy was launched in 2018 to provide specialized training for people with IBD enabling them to raise awareness on specific topics and to become advocates for their IBD patient community. Academy qualified patients will become trainers of trainers within their own local community. Training usually takes place online as well as during face to face workshops. 

Below you will find more information on the archived and current training courses available: 

2018 Pilot Phase 

The Academy develops partnerships within the IBD HCP community  such as  ECCO, UEG, ESPGHAN, EMA, etc. Cooperation could include developing topics covering guidelines – basics, nutrition, medications, communication with patients adult/pediatric), how to deal with the health care system, how to deliver patient community’s message to pharma companies and how to handle pharma representatives, how to convey the message that IBD is an invisible illness etc.

The pilot phase was launched in mid 2018. The idea of this project came about following several major surveys in recent years that highlighted main issues within the unmet needs of the IBD community. The EFCCA Academy is a pioneer project with the aim to provide specialized training addressing these issues and will instruct Certified Patients to raise awareness on IBD. Certified Patients will be trained in public speaking, communication skills and in strategic topics, such as life management with IBD, patient rights, work discrimination and labor rights. They will effectively use their own patient experiences and the findings of several EFCCA surveys. 

During the pilot phase the training included included face-to-face workshops and courses via EFCCA’s online learning platform. 

Kick off meeting, 14 - 17 June 2018, Brussels
The kick off meeting for the EFCCA Academy took place from 14-17 June 2018. A pilot group of 10 patient representatives met in Brussels for an intensive training on advocacy to raise IBD awareness.  Students were trained in strategic topics, such as public speaking, communication skills, life management with IBD, and how to effectively use the outcomes of EFCCA surveys. Their feedback will allows us to improve and give shape to the next round of EFCCA Academy trainings. You can read more about the meeting in the October issue of our EFCCA Magazine at: https://efcca.org/magazine/efcca-magazine-32018

See agenda: EA Agenda June 15-17, 2018rev.pdf

For more information please contact sanna.lonnfors@efcca.org

2020 EFCCA Academy  - Clinical Trials

In 2020-2021 we have developed an exciting set of training modules on the issues of clinical trials. Clinical studies provide unique opportunities and are an essential step towards discovering new treatments as well as new ways to detect and diagnose a given disease, yet patient participation in these studies is persistently low. Various studies that have been carried out in the past to assess public awareness, perceptions, and attitudes toward clinical trials or studies show clearly a lack of knowledge and understanding of them amongst the public in general, amongst patients and even amongst some patients that are already participating in a clinical trial.

Information about clinical studies/trials is at times confusing, too technical and beyond the understanding of a layman. Finding reliable and verifi ed information about clinical studies is another issue. Further obstacles for participating have been cited, such as diffi cult access to trial sites as well as concerns about safety and about being placed in a placebo trial group. The Academy training modules dealt with the majority of these issues.

First Module:   “Clinical Trials basics” - 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.

Second Module: “Diving deeper into Clinical Trials”  - 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.

Third Module: “Breaking the myths around clinical trials” -  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: 

     

 

 

          

2021 EFCCA 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.

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.

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!

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.

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 EFCCA 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 

 

2024 EFCCA Empowerment Academy: Everything You Need to Know About EFCCA

 

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

The programme provides participants with a global learning journey led by EFCCA 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.

- Module 1, "Understanding how EFCCA works under Belgian law: An easy guide," is 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.

- Module 2, "The history of EFCCA: mission, values, and strategic priorities," is taught by EFCCA's CEO Luisa Avedano and Head of Communications Isabella Haaf. The module delves into EFCCA's historical evolution, purpose and goals, structure, and decision-making bodies. It also reveals the membership procedure and EFCCA's collaborative network.

- Module 3, "Protect our values: Ethics & Transparency for Patients’ organisations," is 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.

- Module 4, "In-depth exploration of EFCCA's strategic areas," is taught by EFCCA Head of Communications Isabella Haaf, EFCCA'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 EFCCA's mission: Awareness Raising, Empowerment, and Research & Development, through various projects and activities.

- Module 5, "Empowering Patient Associations: EFCCA Best Practices," taught by Andrea Broggi, covers EFCCA'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