#NothingAboutUsWithoutUsThe meaningful involvement of people with lived experience is essential across everything that matters to them. Their engagement should encompass not only their own care but also active participation in policy-making, governance and research. At the EU level, regulators have sought to reinforce existing provisions and introduce new mechanisms for engaging people with lived experience more systematically in decision-making processes. Their involvement not only improves transparency and trust in regulatory systems but also ensures that health interventions are better aligned with real-world needs. A notable example is the EU Health Technology Assessment (HTA) Regulation, seeking to make innovative, effective medicines, vaccines, tools, technologies and devices designed to improve health outcomes, accessible to all across the EU. The Regulation introduced the opportunity for people with lived experience and healthcare professionals (HCPs) to play a stronger role in this process by contributing to Joint Clinical Assessments and Joint Scientific Consultations – ensuring that the end-users' perspective is integrated into the assessment process. Another critical development is the ongoing revision of the EU General Pharmaceutical Legislation (GPL), which aims to improve access to medicines, support innovation, enhance environmental sustainability and streamline regulatory procedures across the EU. A key provision of the European Commission’s proposal is the inclusion of four patient representatives with voting rights on the Committee for Medicinal Products for Human Use (CHMP) and in the Pharmacovigilance and Risk Assessment Committee (PRAC) at the European Medicines Agency (EMA) – a step that signals a commitment to institutionalising meaningful patient participation. However, the recent agreement by the Council of the EU weakens the Commission’s proposal by removing voting rights for patient representatives and reducing their participation to a consultative role. As IDF Europe, we remain committed to advocating for the meaningful engagement of people living with diabetes (PwD) and other conditions in all decision-making forums that affect their lives. Together with more than 70 civil society organisations, we have endorsed a joint call to action urging EU policymakers to ensure their strong participation within EMA. As an organisation representing both HCPs and PwD, IDF Europe has long represented the voice of the diabetes community at the EMA through engagement in various working parties. One of our representatives, former IDF and IDF Europe Board Member, João Valente Nabais, has been a leading voice in this space. Read what he has to say about the importance of engaging PwD in decision-making:
![]() YOUTH PLATFORMThe YLL 2025 has officially started! On June 11, we officially kicked off the Youth Leadership Lab (YLL) 2025 with an online opening session attended by this year’s YLL participants, IDF Europe leaders and partners, and representatives from the hosting associations: AGD Parma and ANIAD. During the session, the IDF Europe team and mentors introduced the YLL programme, outlining its structure and goals. Participants also had the chance to introduce themselves and get to know each other for the first time. ![]() On June 21, participants came together again for an online workshop, where they began developing their ideas for the four group projects they will be working on during the camp, focusing on key themes: advocacy awareness, shaping the next IDF Europe Youth Forum, EU advocacy and International Youth Day. MEMBER NEWS
Association Luxembourgeoise du Diabète hosted a Diabetes and Labour Law Conference On June 13, the Association Luxembourgeoise du Diabète held a roundtable event on “Diabetes and Work”, gathering PwD, HCPs, employers and policy makers to raise awareness of the challenges faced by PwD in the workplace. ![]() Presentations from the Ministry of Health, ALD, PwD and occupational physicians set the stage for dynamic roundtable discussions. Key points included the gap between outdated legislation and advances in medical technologies (e.g., insulin pumps and continuous glucose monitors). Participants emphasised the need for harmonised EU-wide reforms and stressed that increased trust, communication and coordination between PwD, employers and HCPs are key to creating more inclusive and supportive work environments. IDF EUROPE NEWS, ACTIVITIES AND EVENTS
IDF Europe community webinar: On July 8, at 17:00 CET, IDF Europe will hold a webinar for its Member Associations and YOURAH Network on the latest developments in T1D screening. Experts will discuss the underlying causes and progression of T1D, the role of islet autoantibodies in early detection and key considerations regarding who should be screened, when and why. The session will also cover the psychological aspects of T1D screening, including communication, decision-making and support for individuals who test positive. *Please note that this webinar is exclusively open to IDF Europe Member Associations and YOURAH Network. IDF EUROPE ADVOCACY AND COMMUNICATION WORKSafeguarding patient voices in EU health decisions IDF Europe endorsed the joint statement drafted by the European Patients' Forum and EURORDIS-Rare Diseases Europe calling on policymakers to safeguard meaningful involvement of people with lived experience at the EMA − including the retention of patient voting rights in the Committee for Medicinal Products for Human Use (CHMP), as part of the EU General Pharmaceutical Legislation revision. People living with diabetes and other conditions must be actively involved in decisions that have a direct impact on their health and lives. Their voice must be formally recognised in regulatory processes such as those of the EMA. Diluting this voice may result in decisions that do not fully reflect the perspectives and needs of those whom it will affect. ![]() HEPA Guide on physical activity to prevent and manage NCDs EuropeActive recently published the HEPA Guide – a resource promoting Health-Enhancing Physical Activity (HEPA) for the prevention and management of NCDs including diabetes, cardiovascular diseases, chronic respiratory diseases and cancer. IDF Europe had the opportunity to contribute to this year’s guide by providing the diabetes chapter, which explores the challenges PwD face in staying active, practical guidance for developing tailored physical activity programmes and real-world examples of good practices from across Europe. Physical activity is key in preventing and managing diabetes. To make a real impact, it must be adapted to individual needs, ensuring it’s accessible, inclusive and effective. ![]()
Tackling diabetes is key to creating a healthier, The recent edition of The Parliament magazine focused on “Building a competitive healthcare sector”, features an op-ed by IDF Europe titled “Tackling diabetes is key to creating a healthier, more competitive Europe”. In the article, we outline how diabetes, as a marker of health system resilience and sustainability, can help strengthen competitiveness, which is currently at the core of the EU’s agenda. Tackling diabetes is not just a health issue. Investing in research and innovation in diabetes prevention and care improves health outcomes, reduces healthcare costs, strengthens human capital and workforce resilience, and drives productivity. Engaging with people with lived experience and citizens at large will be a prerequisite to success. READINGS ON DIABETESWe navigate the management of diabetes on a daily basis as people with lived experience or HCPs; we deal with politics, policies, research and many other aspects of diabetes, but rarely do we find the time to frame diabetes in a historical context. Readings on Diabetes, presented to IDF Europe by Angelo Argenteri, MD, Maria Stella de Sabata, MA, and Andrea Ascoli Marchetti, MD, is a journey through the major diabetes milestones, one of the oldest and still most widespread diseases, with anecdotes, stories, historical facts and a very rich iconography. You may be familiar with some, less with others. We invite you to discover more about diabetes than your daily experience of it and trust you will be enriched and inspired by these stories. The IDF Europe Newsletter will present each month a chapter from Readings on Diabetes, which can be downloaded in full here. 5. JOHANN GEORG WIRSUNG – MURDER IN PADUA In this chapter, the story of Johann Georg Wirsung unfolds at the crossroads of scientific discovery and academic rivalry in 17th-century Europe. A skilled anatomist working at the University of Padua, Wirsung made a lasting contribution to medical science with his identification of the main pancreatic duct – an insight that would later prove instrumental in the understanding of human digestion. While performing a dissection in 1642, assisted by two students who would become notable physicians themselves, Wirsung traces a mysterious duct running through the pancreas and captures the finding in a detailed copperplate engraving. However, his career is cut short. On the evening of August 22, 1643, just outside the Basilica del Santo, he is shot and killed by Giacomo Cambier, a fellow student, likely over academic envy. Set in the intellectually vibrant atmosphere of Renaissance Padua, this chapter offers a look into the world of early modern medicine. Wirsung may not be widely known today, but his work remains part of the foundation of anatomical science. Are you curious to learn about the long quest to understand diabetes? Explore this fascinating story in Chapter Five of Readings on Diabetes. ![]() NEWS FROM EUROPE
Cook2DIAbeat symposium: Cook2DIAbeat is an Erasmus+ KA2 project aiming to find synergies between nutrition, medicine and gastronomy to support PwD. On August 27, at 9:45-14:45, the project will be holding a symposium in Brussels and online to launch a new e-learning platform developed by and for people living with T2D to make food a powerful tool for overall well-being. Designed primarily for PwD, the platform can also be used as a resource by HCPs to support lifestyle changes. The event is open to HCPs, dietitians, researchers people living with T2D and anyone interested in the role of food in diabetes care and will include keynotes and open discussions on food, diabetes and integrated care models for chronic conditions. ![]() EU-FUNDED PROJECTSDigiCare4You shows IDF Europe is part of the DigiCare4You Horizon 2020 project which aims to improve the early prevention and management of Type 2 diabetes (T2D) and hypertension. Early results from the project reveal health improvements after just 12 months. Fewer adults with intermediate hyperglycaemia progressed to T2D, while many saw a return to normal blood glucose levels. Many participants with T2D experienced reduced HbA1c levels and those living with overweight or obesity saw improvements in weight, BMI and cholesterol – all without greater reliance on medication. DigiCare4You interviews DigiCare4You recently published an interview with Delfien Gryspeerdt, from Ghent University, one of the project’s partners. In the interview, she explains how her team brings a health economics perspective to the project by estimating the implementation costs of the DigiCare4You solution across implementation countries and developing a model that predicts long-term value for money and financial impact of the intervention. “This evidence helps policymakers make informed decisions about investing in T2D and hypertension.” ![]()
UPCOMING EVENTS ACROSS EUROPEWebinar: "T1D screening: what we know and where we stand" European Association for the Study of Diabetes (EASD) 60th Annual Meeting IDF Europe Symposium at EASD 2025 | Advancing Integrated Diabetes Care Across Europe UN High-Level Meeting on the prevention and control of NCDs and the promotion of mental health and wellbeing (HLM4) ![]() Do you want to know more about IDF Europe's news and events? Please confirm that you are still happy to hear from us! |