Patients Organisation Partners

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Digestive Cancers Europe (DiCE) and Lung Cancer Europe (LuCE) are partners in the GUIDE.MRD consortium and have an important role in ensuring the robust contribution of patients from across their networks in the project.

DiCE and LuCE have the strategic role of engaging relevant patients and patient organisations across the project and in leading the GUIDE.MRD Patient Advisory Board. They will continuously inform the patient community about the findings and progress of the GUIDE.MRD project and studies through education and presentations of project results at events such as patient organisation meetings and international scientific meetings.

DiCE - Digestive Cancers Europe

DiCE is a European non-profit umbrella organisation uniting nearly 40 patient organisations across 32 European countries. DiCE envisions a Europe where fewer people are impacted by digestive cancers and where every individual affected receives a timely diagnosis with personalised treatment and care, leading to better survival and quality of life.

DiCE’s Mission is to support patients and carers to improve survival and quality of life, through advocacy, research and awareness-raising. As the voice of the digestive cancer community, they champion early diagnosis and equal access to the highest standards of treatment and care for everyone across Europe.

Learn more about DiCE here: digestivecancers.eu

Role of DiCE in GUIDE.MRD

DiCE co-led the patient advisory board (consulted on their understanding of ctDNA (circulating tumor DNA) and MRD (minimal residual disease), interpreting and acting on test reports, and reviewing documents and reports).

DiCE contributes to: set-up a patient advisory board; stakeholder engagement and other measures to maximize impact, to ensure that the needs of patients and guiding principles for patient-friendly data governance are integrate; dissemination and communication to the patient community help shaping, building and reviewing materials towards patients and co-author relevant publications as per scientific journal guidelines, understand stakeholder needs and healthcare pathway expectations and align with project activities and outcomes, and multi-stakeholder dialogues on decision making in precision oncology.

Why does DICE participate in the GUIDE.MRD project?

Part of DiCE mission is to leverage patient’s views and needs to improve QoL (quality of life) and the survival of digestive cancer patients and their prevention. GUIDE.MRD represents a unique opportunity to rethink the design and development of scientific projects and clinical trials, ensuring patients’ voices are incorporated in a co-creation process that will provide targeted solutions and more sustainable results.

DiCE Principal Investigators involved in GUIDE.MRD

Ana Martins holds a PhD in Biomedical Engineering from the University of Minho, Portugal in collaboration with Rice University, USA. She did a Postdoc at the University of Minho and at Columbia University. Afterwards, she was selected to work at the Italian Institute of Technology, Italy, as a Marie Curie Researcher for 5 years. In 2023, Ana Martins joined Digestive Cancers Europe (DiCE) as a Medical and Scientific Project Manager. She is responsible for the tasks of DiCE and the voice of patients within the GUIDE.MRD project.

Marianna Vitaloni is a patient advocate and, at Digestive Cancers Europe, manages medical and scientific initiatives using her multidisciplinary experience to build the bridge between science and global health.

She has been passionate about human health and well-being from the beginning of her professional career. She laureated in Medical and Pharmaceutical Biotechnology and obtained her Ph.D. in Genetic and Human Pathology due to international collaborations with American and Spanish institutions. As a biomedical researcher, her practice focused on regenerative medicine, stem cells, and disease therapies.

During her research studies, a strong interest in public and global health drove her career toward international initiatives and projects to improve human health. She graduated in public health and collaborated with the WHO Genomics and Global health initiative. She has spent the last six years serving patient organisations.

If you want to know more about the GUIDE.MRD Project, please do not hesitate to reach us: anam@digestivecancers.eu and marianna@digestivecancers.eu

LuCE - Lung Cancer Europe LUCE

LuCE is the voice of people living with lung cancer and their families with lung cancer at European level. LuCE provides a European platform for lung cancer patient organizations and networks and supports the establishment of national lung cancer patient organizations in European countries where such groups do not yet exist.

LuCE’s Mission is to be the voice of Europeans impacted by lung cancer. They collaborate with members and other stakeholders to destigmatize the disease and ensure that those impacted by lung cancer get the care they need to achieve the best possible outcomes. They empower members to ensure strong and effective lung cancer patient advocacy across Europe.

Learn more about LuCE here: www.lungcancereurope.eu

Role of LuCE in GUIDE.MRD

In a rapidly changing scenario in which accurate, early and precise diagnosis is becoming a major game-changer in lung cancer, GUIDE.MRD represents a true valuable opportunity to improve the outcomes for patients and, at the same time, being able to incorporate the patient preferences and needs in this regard.

Why does LuCE participate in the GUIDE.MRD project?

As member of the GUIDE.MRD consortium, together with Digestive Cancers Europe (DiCE) and led by The Synergist, LuCE is truly committed to contribute in a productive continuous way to ensure the best outcomes for everyone impacted by the disease.

LuCE Principal Investigator involved in GUIDE.MRD

Alfonso Aguarón (Burgos, Spain, 1981) is the Policy Officer of Lung Cancer Europe (LuCE).
With a background in Computer Science at the University of Burgos, he become involved in patient advocacy after being diagnosed with Hodgkin’s Lymphoma in 2008. During his career he has been working actively in the Spanish Group for Lymphoma, Myeloma and Leukaemia Patients (AEAL) and the Spanish Group for Cancer Patients (GEPAC). In 2014, he joined the executive office of Myeloma Patients Europe as Project Manager, and in 2018 he started his new role in Lung Cancer Europe (LuCE). During all his professional career, he has been involved in several multistakeholder workgroups and advisory boards, both at a national and international level, with a special interest in patient involvement in clinical research, access, European health policy and capacity building among member organizations. He is responsible for the tasks of LuCE and the voice of patients within the GUIDE.MRD project.

If you want to know more about the GUIDE.MRD Project, please do not hesitate to reach Alfonso at alfonso.aguaron@lungcancereurope.eu

This project is supported by the Innovative Health Initiative Joint Undertaking (JU) under grant agreement No 101112066.
The JU receives support from the European Union’s Horizon Europe research and innovation programme and EFPIA (including Vaccines Europe), MedTech Europe and LGC Clinical Diagnostics INC.
Funded by the European Union, the private members, and those contributing partners of the IHI JU. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the aforementioned parties. Neither of the aforementioned parties can be held responsible for them.