#NothingAboutUsWithoutUs
The 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:
As someone living with Type 1 diabetes (T1D), having had the opportunity to represent the diabetes community in regulatory discussions has been both a personal and collective responsibility and one of the most meaningful and empowering roles I have ever had. During my time as a patient representative at the EMA, I always felt that my lived experience was not only welcomed but genuinely valued. I could see how the perspectives I brought, like other patients’ representatives, grounded in daily realities, were reflected in decisions that ultimately helped improve the lives of people living with diabetes and other conditions.
Living with a chronic condition gives you a unique perspective, one that no clinical report or expert opinion can fully capture. Bringing that lived reality into regulatory spaces is not just valuable, it is essential. Because no one understands the impact of health decisions better than those who live with them every single day. At EMA, I saw how including the patient voice made the process more grounded, more transparent, and more attuned to people’s needs.
But not all institutions have embraced this approach to the same extent. Barriers to participation still exist – structural, procedural and cultural. That’s why the proposal to strengthen patient involvement in the revised EU pharmaceutical legislation was such a hopeful step forward. And why is the recent decision to weaken that proposal so concerning.
I believe strongly that people with lived experience must not be seen as optional participants, but as essential contributors to the development of policies and practices that affect their health and lives. That’s why protecting and strengthening patient involvement — not weakening it — must remain a priority.
João Valente Nabais
Past President IDF Europe
Past Vice-President IDF
YOUTH PLATFORM
The 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
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The Finnish Diabetes Last May, the Finnish Diabetes Association marked its 70th anniversary with a seminar that brought together members of the diabetes community as well as other distinguished guests, including the Minister of Social Security, Sanni Grahn-Laasonen, and the Director of the Finnish Institute for Health and Welfare, Hanna Tolonen. In their remarks, both recognised the association as a cornerstone of public health in the country and expressed gratitude for its long-standing commitment and collaboration in improving the well-being of the population. We warmly congratulate the Finnish Diabetes Association on this important milestone, which reflects its enduring impact and leadership in diabetes care. 
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Slovenia walks for health: On May 31, the Slovenian Diabetes Association launched the annual #DarujemKilometre (Donate Kilometers) campaign with walks in 23 locations. Since 2019, the initiative has encouraged people to track their kilometers while walking, cycling or running to promote the importance of physical activity and raise awareness of diabetes. This year’s launch added 7,077 kilometers, bringing the total to over 739,000 and moving closer to the campaign’s 1-million-kilometer goal. Commenting on the event, Ambassador, Mateja Malnar Štembal, and IDF Europe Chair, Prof. Tadej Battelino emphasised the role of physical activity in both prevention and management of diabetes. 
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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
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Save the date: IDF Europe symposium at EASD 2025 On September 18, IDF Europe will hold a symposium at the 61st EASD Annual Meeting, in Vienna. Building on last year’s symposium on the personalisation of care, this year’s session will explore the need to advance integrated diabetes care across Europe. The programme will showcase practical examples of integrated care models implemented in various European countries, highlighting successes and lessons learned. Key experts will discuss ongoing efforts to address the fragmentation preventing the wider implementation of integrated care models across Europe. PwD will be part of the conversation, sharing their experiences and explaining why integrated care is essential to achieving better health outcomes. 
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IDF Europe We’re excited to share that IDF Europe has officially joined the EUPATI network! EUPATI (European Patients' Academy on Therapeutic Innovation) is a non-profit foundation dedicated to advancing patient involvement in health innovation by providing information, education and opportunities for collaboration for people with lived experience and researchers. At IDF Europe, we believe that meaningful progress in diabetes care can only be achieved through the active involvement of PwD in health research. Our partnership with EUPATI is a key part of our ongoing efforts to empower PwD to actively shape the future of research and innovation that directly impacts their lives. 
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IDF Europe at the ELPA event on Fatty Liver & NCDs On June 3, IDF Europe joined the European Parliament event organised by the European Liver Patient Association (ELPA) on “Fatty Liver & NCDs: a European policy action”. The event gathered representatives from lived experience communities across the non-communicable diseases (NCDs) spectrum to call on policymakers to make chronic conditions such as liver disease and diabetes a priority. IDF Europe Regional Manager, Elisabeth Dupont, participated in the discussion and stressed the importance of listening to the voice of people with lived experience in designing policies that address NCDs and their interconnectedness. 
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Breakthrough T1D at the European Parliament On June 5, IDF Europe joined the European Parliament event organised by Breakthrough T1D and hosted by MEP Sokol on “Accelerating breakthroughs to address unmet needs in T1D”. During the event, IDF Europe Project Coordinator, Cameron Keighron, emphasised the potential of cell therapies in reducing or eliminating the need for constant insulin management. Cameron also stressed the importance of involving PwD not just as patients but as partners in shaping T1D innovation, advocating for collaboration between researchers, clinicians, policymakers and PwD to ensure that therapies are accessible, equitable and meet real-life needs. 
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IDF Europe at the On June 17, IDF Europe Board Member, Dr. Sufyan Hussain, and IDF Europe Project Coordinator, Cameron Keighron, joined a plenary session on “Ethical and Societal Pathways for Global Adoption of Beta-Cell Therapies” at the International Pancreas and ISLET Transplant Association (IPITA) Congress, in Pisa. During the session, they discussed PwD's role in driving research and spoke about the daily realities of managing T1D, the extra decisions, emotional toll and invisible labour T1D create, and how these experiences must shape how we design, test and deliver new therapies. 
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Navigating Opportunities for On June 19, IDF Europe and Breakthrough T1D held a webinar to discuss research opportunities for T1D through various HORIZON calls and to highlight the importance of involving PwD in research. Several HORIZON Europe calls under Cluster 1 ‘Health’ that are relevant to T1D are currently open, with the deadline to submit proposals set for September 16. If you are interested in collaborating with IDF Europe and Breakthrough T1D on any of these proposals, please send us an email at sabine.dupont@idf-europe.org. 
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IDF Europe community webinar:
T1D screening – what we know and where we stand
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 WORK
Safeguarding 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.
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World Environment Day On World Environment Day (June 5), we embraced the theme "Beat Plastic Pollution." Plastic waste is a global issue permeating various sectors, including healthcare. Medical products such as CGMs, syringes and insulin pumps are essential for managing conditions like diabetes. But their packaging and single-use components contribute significantly to plastic pollution. To continue benefitting from life-changing medical devices, we must rethink how these products are designed, manufactured, packaged and recycled. 
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World Refugee Day On June 20, we marked World Refugee Day by affirming the right to uninterrupted, affordable and equitable access to health for refugees and forcibly displaced people. Access to care is especially important for those living with NCDs such as diabetes. Managing these conditions requires consistent access to medicines, devices and support systems. Health is a human right. We need to ensure that all refugees have universal access to care, regardless of their status. 
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Tackling diabetes is key to creating a healthier,
more competitive Europe
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 DIABETES
We 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
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Insulin On Board 2025 The seventh edition of the Insulin on Board Cup (IOB Cup) 2025 took place in Warsaw, Poland on June 21-22. This football tournament is organised by the Foundation for Children and Adults with Diabetes and, since its first edition it represents a great opportunity for the international diabetes community to come together, have fun and promote the importance of physical activity for PwD. This year, more than 200 players living with diabetes from all over Europe participated in the event. IDF Europe is honoured to be a patron of the event. 
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Transforming CVD care for people living with NCDs The Global Heart Hub recently published a report following the Unite Summit held last November which gathered lived experienced communities from across diabetes and other NCD areas. The report provides a roadmap to improve the prevention and care of NCDs and to address their interconnectedness. IDF Europe had the pleasure of joining the Summit to represent the perspective of PwD and highlight their needs. With diabetes being the root cause of many other NCDs, including CVD, prevention, screening, access to medicines and technologies, as well as education and mental health support, are all crucial to reduce their burden. 
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Cook2DIAbeat symposium:
recipes for living with T2D
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 PROJECTS
DigiCare4You shows
promising early results
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
Delfien Gryspeerdt
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.”
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ASSESS DHT On June 11-12, IDF Europe Director, Strategy & Policy, Sabine Dupont, and Policy & Project Coordinator, Izabell Thunström, joined the ASSESS DHT Consortium Meeting in Vienna. ASSESS DHT is a Horizon 2020 project aiming to boost the adoption of trustworthy and effective Digital Health Technologies (DHT) across Europe. During the meeting, consortium members discussed the project's progress and next steps including updates on the development of an assessment manual for DHTs and its piloting and strategies on how to ensure adoption of the results and increased use of the methodology by health technology agencies. 
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Trials@Home Over the past years, IDF Europe has been part of the Innovative Medicines Initiative (IMI) project, Trials@Home, which explores the implementation of decentralised clinical trials (DCTs), where data is collected by participants in their own homes to improve accessibility, representativeness, effectiveness and efficiency. The project is now coming to an end with the publication of recommendations for the successful implementation of DCT in Europe and beyond. The recommendations will be presented during a conference on October 31, in Utrecht and online, alongside engaging panels and discussions on the project's learnings, impact and sustainability, and the future of DCTs. 
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UPCOMING EVENTS ACROSS EUROPE
Webinar: "T1D screening: what we know and where we stand"
Online, July 18, 2025, 16:00 CET | Register here
European Association for the Study of Diabetes (EASD) 60th Annual Meeting
Vienna, September 15-19, 2025 | For more information, click here
IDF Europe Symposium at EASD 2025 | Advancing Integrated Diabetes Care Across Europe
Vienna, September 18, 11:00-12:30 | For more information, click here
UN High-Level Meeting on the prevention and control of NCDs and the promotion of mental health and wellbeing (HLM4)
New York, September 25, 2025 | For more information, click here
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