About the Patient Advisory Committee
A clear priority of EDENT1FI is to keep the needs and concerns of people living with Type 1 Diabetes at the center of the project. The involvement of patients is streamlined by the Patient Advisory Committee (PAC).
The Patient Advisory Committee gives a voice to the experiences, opinions and desires of the patients and their relatives to help ensure that EDENT1FI’s goals and strategy are closely aligned with the goals of people living with, and affected by Type 1 Diabetes (T1D). By bringing a powerful patient and family perspective to EDENT1FI, the PAC helps ensure EDENT1FI delivers a patient-centric approach and specific outcomes with the potential to improve the lives of people with Type 1 Diabetes.
Specific activities
We (the PAC) advise the Management Board of EDENT1FI providing input in a number of areas including informed consent, protocols review and relationships with regulatory authorities and patient organizations who are interested in the EDENT1FI project. Through EDENT1FI’s scientific network, we have a chance to connect with patients from many European countries. We help to communicate the results to a wider public and share feedback. We work closely with the Type 1 Diabetes community, taking their views into consideration for EDENT1FI.
Above all, the members of this committee act as Type 1 Diabetes ambassadors within EDENT1FI, helping to retain focus on what matters the most, that is, the people living with this disease every single day of their lives.
On November 19-20, 2024, the PAC held its first in-person meeting during the EDENT1FI Annual Meeting in Paris. This milestone event provided an opportunity to introduce our diverse committee to the EDENT1FI researchers, emphasizing our commitment to integrating a patient-centered perspective into their work. We also shared updates on the PAC's achievements to date, showcasing our progress and impact. Last but not least, we also took some time for team building activities.
Our PAC members
“What does screening for early-stage Type 1 Diabetes mean to those who know it best?” The quotes below come from individuals living with Type 1 Diabetes or those with loved ones at risk. Their words capture the transformative impact of early detection—offering clarity, preparation, and hope in the face of uncertainty. These personal reflections highlight how screening empowers families, alleviates anxiety, and opens doors to innovative treatments and prevention trials.
- Carmen Hurtado del Pozo, PhD
- Country: Spain
- Profession: Director European Research at Breakthrough T1D, Co-lead EDENT1FI PAC
I am not personally affected by Type 1 diabetes, but I have worked as a scientist for 15 years, focusing on understanding the mechanisms behind diabetic complications. As an academic, I always felt that the patient perspective was missing in the daily life of a scientist. Now, representing Breakthrough T1D in Europe and leading the Patient Advisory Committee in EDENT1fi, I am proud to bridge this gap and bring the patient's voice to the forefront of our research efforts.
- David Lynn
- Country: Scotland
- Age: 36
- Profession: Detective, Police Service of Scotland
- Experience: I have been a type 1 Diabetic for over 30 years
Type 1 Diabetes can be a demanding and relentless condition but, with the help of ever evolving technology, it hasn't stopped me doing anything in life and it's so important that newly diagnosed people know the future is still limitless.
Prior to having my children screened I was struggling with guilt and uncertainty at the prospect of them inheriting T1D. Screening allowed me to come to terms with the fact that one of my children was positive for one autoantibody and it has allowed me to look at the situation with a new sense of pragmatism and positivity.
- Francesca Ulivi
- Country: Italy
- Age: 53
- Profession: CEO, Fondazione Italiana Diabete (FID)
- Experience: Involved in PACs, member of the board of Innodia as pwd representative
I strongly believe in a future without type 1 diabetes and strive to do my best to help accelerate the moment when we get there, thanks to science and research.
- Jurgen Vercauteren
- Country: Belgium
- Age: 48
- Profession: EDENT1FI Project Officer
- Experience: Diagnosed with T1D on New Year's Day 2015
As a father of three who lives with T1D, I am deeply committed to ensuring they never have to face the 24/7 burden that I need to face every day with this condition. Our three children were screened for T1D, and fortunately, none have autoantibodies; our two eldest are in the clear, but our youngest will be retested in a few years to confirm she won't develop T1D. Involving those with T1D in research like EDENT1FI is crucial, as their experiences and insights drive meaningful advancements and solutions.
Screening for early-stage Type 1 Diabetes is not just about detection—it’s about giving families the tools to face the future with knowledge, preparation, and hope. For me, it’s a no-brainer: transforming uncertainty into empowerment and enabling proactive steps toward better outcomes.
- Magdalena Malachowska
- Country: Poland
- Age: 23
- Experience: Diagnosed with T1D at 18
Living with T1D requires a lot of energy and patience, but it also gives us the unique power to push forward and achieve things we never expected. I was diagnosed with T1D a few days before my 18th birthday, just as I was about to start learning to live my adult life. Initially, it brought a lot of negative emotions, but after changing my approach towards diabetes, I became able to deal with it much better. After living with T1D for four years now, I believe that appropriate diabetes management cannot be achieved without its acceptance, emotional and psychological support as well as ongoing education in this field. Providing the best possible care to people living with T1D and those who will be diagnosed is very important to me. That's why I'm thrilled to be a part of the PAC team and act on behalf of the patients living with T1D and their families. I hope that including our perspective will contribute to even greater success for the EDENT1FI project!
I’m grateful that research has brought us to the point where early detection and the potential delay of T1D are possible. That’s why I encourage my siblings to get screened, even though I know it can cause additional stress. I believe that with the right support and ongoing education, we can make the process more accessible and adapted to everyone’s needs.
- Michaela Mervartová
- Country: Czech republic
- Age: 21
- Profession: singer, actor
- Experience: Spreading awareness about type 1 diabetes in cooperation with "Sladké děti" (Sweet kids)
I got diabetes when was 13. It was hectic and stressful time for me and my family. I wish we had the possibility of knowing in advance so we can prepare ourselves. I don´t have anyone in my family with diabetes. You would never have thought it can be you. Life is unpredictable and screening for early-stage TD1 is a gift.
- Ricardo Eleuterio de Oliveira
- Country: Portugal
- Age: 26
- Profession: Engineer, Computer Science
- Experience: Young Leader for Portugal and elect for Europe at the International Diabetes Federation
Through research and innovation, we have made the treatment for Diabetes more personalised than it has ever been. Contributing as a PAC Member to EDENT1FI is my opportunity to build a way of getting ahead of Diabetes, and start even before the diagnosis.
- Sophie Hindkjær
- Country: Denmark
- Age: 31
- Profession: working within law at the state
- Experience: Involved in patient associations nationally and internationally, member of the board at Steno Diabetes Center Copenhagen as user representative, has been living with type 1 diabetes since 2011 and is a mother of two young children who are screened.
We all have different strengths - we as patients have the strength of the lived experience and a keen focus on how research can affect our lives. Researchers have other great strengths, and when our combined strengths are used and acknowledged in research, the results become stronger and more relevant. Together we are stronger!
As a mother who has type 1, it is a privilege to have my children screened. I can put the concerns about whether they will get diabetes to rest for some time. Even if the unlucky thing happened and they were positive, I could prepare myself and my kids about what it’s like living with a chronic disease.
- Thomas Fuehrer
- Country: Austria
- Age: 22
- Profession: Student, Engineering
- Experience: Representative for the Austrian Diabetes Society, International Diabetes Federation, Board Member of „WirSindDiabetes“(translated: „we are diabetes“) (NGO)
By collaborating and learning from each other, we drive innovative solutions for diabetes care and prevention. Together, we can achieve more!
Screening for (early-stage) Type 1 diabetes provides a crucial opportunity to empower families, facilitate prevention trials, and reduce the emotional and physical burden of a sudden onset. It is an investment in healthier futures.
- Tobias Zahn
- Country: Germany
- Age: 49
- Profession: Consultant for drug development
- Experience: Research on biology of insulin secretion (as graduate student). Expertise in clinical trials and regulatory approval of medicines.
I’m thrilled to see that, after decades of research, medicines are now emerging for prevention of type 1 diabetes!