Partners

BIOBANKING AND BIOMOLECULAR RESOURCES RESEARCH INFRASTRUCTURE CONSORTIUM (BBMRI-ERIC)

Coordinator

Pan-European research infrastructure for biobanking, which brings together all the main players from the biobanking field – researchers, biobankers, industry, and patients – to boost biomedical research. BBMRI-ERIC enables the development of innovative technology and processes as a cross-domain network that facilitates responsible access to high quality samples, data and biomolecular resources. Achieved through multidisciplinary expertise and service provision, scientific excellence, knowledge exchange and partnerships in health and life sciences.

BBMRI-ERIC, as the coordinator, provides a biobanking infrastructure connecting over 600 biobanks as well as an ELSI Helpdesk that offers a network of experts crucial for addressing the project’s focus on ethical and societal implications.

• Coordinates and manages the project (WP7)

• Leads and implements open call for engagement activities (WP4)

• Leads reflection on Mission: Cancer goals (WP5)

• Co-leads dissemination, communication, and training (WP6)

Contact details:

‘Monica Cano Abadia’  monica.cano.abadia@bbmri-eric.eu

‘Melanie Goisauf’  melanie.goisauf@bbmri-eric.eu 

More information: https://www.bbmri-eric.eu/

Cancer Patients Europe

Cancer Patients Europe (www.cancerpatientseurope.org) is a pan-European and all-cancer type association that, uniting cancer patients, carers, and survivors, envisions reducing the burden of cancer on patients and survivors, their carers, the health care systems, and society as a whole across the European continent. Committed to cooperation, CPE is actively partnering with other stakeholders, further entrenching its commitment to ensuring that all cancer patients, no matter where they live in Europe, have access to the best and most innovative diagnostics and treatments in a timely manner.

• Contributes to setting up the criteria for and publicising the open call for engagement funding (WP4)

• Contributes to identification of communication and training needs and strategies (WP6)

• Contributes to dissemination through diverse communities (WP6)

Contact details:

Contact: Kaustubh Dhurandhar
  kaustubh.dhurandhar@cancerpatientseurope.org

More information: www.cancerpatientseurope.org

TARTU ULIKOOL (UNIVERSITY OF TARTU)

UT enriches the project’s research on stakeholder engagement practices with genomics and participant engagement expertise with insights from Estonian Biobank and MyGenome Portal.

• Provides expertise in genomics, biobanking, participant engagement and personalised medicine platforms

Contact details:

More information: https://ut.ee/et

UNIVERSITA TA MALTA

The University of Malta (UM), tracing its origins to 1592, is Malta’s national public research university and leading institution of higher education. It offers a wide range of undergraduate, postgraduate, and doctoral courses in arts, sciences, and humanities. UM’s mission is to advance knowledge through cutting-edge research and innovative teaching, equipping students with the skills and mindset to lead and innovate. The University’s values uphold excellence, integrity, creativity, and inclusive collaboration, encompassing core themes such as transformative education and research impact. Today, UM is composed of fourteen faculties, a number of interdisciplinary institutes and centres, three schools, and the junior college.

Besides the main campus in Msida, it has three other campuses: Valletta, Marsaxlokk, and Gozo. 

• Contributes to WP3, WP4, WP5 and WP6 with expertise in social sciences, qualitative research, public engagement, training and communication

Contact details:

 +356 2340 2340 

info@um.edu.mt

More information: https://www.um.edu.mt/

UNIVERSITAT WIEN (UNIVIE)

The University of Vienna, ranking among the top 100 universities in the Times Higher Education Ranking of 2026, is a place of interaction, critical thinking and ideas that change our society. The Department of Innovation and Digitalisation in Law (ID Law) established at UNIVIE’s Faculty of Law and led by Univ.-Prof. Dr. Nikolaus Forgó is contributing to the Periformance Project with its proficiency in matters combining law with innovation and digitalisation. The Department has expertise and experience in participating in third-party funded projects with contributions focusing on data protection, information technology law, intellectual property law and regulation of socio-technological innovations and developments in life sciences. Within this breadth of research endeavours, ID Law has acquired knowledge on the legal matters of biobanking and cancer research.

• Contributes to WP2
• Contributes with a comparative law perspective

Contact:

  periformance.id@univie.ac.at

More information: https://www.univie.ac.at & https://id.univie.ac.at/en/

LATVIJAS UNIVERSITATE (LU)

Established in 1919, the University of Latvia (LU) has served as a national centre of higher education and scientific advancement for over a century. The Institute of Clinical and Preventive Medicine conducts both fundamental and applied research in the fields of public health and disease prevention. At the institute, Assoc. Prof. Signe Mežinska leads a research group dedicated to promoting ethically sound and socially responsible research practices, with a strong emphasis on engaging the public and patient organizations.

• Contributes to WP2, WP3, WP4, WP5 and WP6

Contact details:

More information: https://www.lu.lv/

NETHERLANDS CANCER INSTITUTE (NKI AVL)

The Netherlands Cancer Institute comprises an internationally acclaimed research institute as well as a dedicated cancer clinic. This combination ensures rapid translation of research into clinical applications: today’s research for tomorrow’s cure. The Netherlands Cancer Institute leverages the facilitation and translation of research findings into clinical practice. In addition to fundamental, translational, and clinical research, the Netherlands Cancer Institute conducts research on ethical, legal and societal implications of cancer research, often incorporating the patient perspective. These are prominent aspects relevant for PERIFORMANCE.

• Contributes to qualitative research on engagement activities (WP4)

Contact details:

Miriam Beusink   m.beusink@nki.nl 

More information: www.nki.nl

ELLINIKO DIKTYO FRONTISTON EPIONI (GREEK CARERS NETWORK EPIONI)

The Greek Carers Network EPIONI is a national non-profit organization that supports informal, unpaid carers in Greece. Its mission is to provide information, education, and support to carers of individuals with chronic illnesses or disabilities, and to advocate for policies that better recognize and support their vital role. EPIONI organizes events, creates educational platforms, runs awareness campaigns, and lobbies for policy changes like financial support, flexible working hours, and carer leave.  EPIONI: 1) Organizes info events on various health issues of interest to carers. 2) Develops learning platforms for patients and caregivers. 3) Conducts awareness campaigns to highlight the contribution of informal carers to the national health and welfare system.

• Contributes to setting up the criteria for and publicising the open call for engagement funding (WP4)
• Contributes to identification of communication and training needs and strategies (WP6)

• Contributes to dissemination through diverse communities (WP6)

Contact details:

  info@epioni.gr

More information: https://epioni.gr/en/

CENTRE INTERNATIONAL DE RECHERCHE SUR LE CANCER (IARC)

The International Agency for Research on Cancer is an intergovernmental agency, forming part of the World Health Organization of the United Nations. The objective of IARC is to promote international collaboration in cancer research, inform guidelines and policies. The Agency is interdisciplinary, bringing together skills in epidemiology, laboratory sciences, biobanking and biostatistics to study population cohorts and identify the causes of cancer, so that preventive measures may be adopted and the burden of disease and associated suffering reduced. The IARC Laboratory Services and Biobanking group (https://www.iarc.who.int/branches-nme-lsb/) is a key infrastructure for cancer research providing access to extensive cohorts and structured data, through well-defined data management, and expertise for integrating AI and the EHDS.

• Leads WP3 (Social and Ethical Analysis of Public Engagement)
• Provides international perspective

Contact details:

Dr Zisis Kozlakidis kozlakidisz@iarc.who.int

More information: https://www.iarc.who.int/

EURORDIS – RARE DISEASES EUROPE

EURORDIS-Rare Diseases Europe is a non-profit alliance of over 1,000 rare disease patient organisations from 75 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies, and services. EURORDIS works together with rare disease national alliances and disease-specific European federations and networks, including the Rare Cancer Advocates Network on policies and specific actions.

• Contributes to setting up the criteria for and publicising the open call for engagement funding (WP4)
• Contributes to identification of communication and training needs and strategies (WP6)
• Contributes to dissemination through diverse communities (WP6)

Contact details:

 ariane.weinman@eurordis.org

More information: https://www.eurordis.org/

ELLINIKI OMOSPONDIA KARKINOU ELL OK (HELLENIC CANCER FEDERATION)

The Hellenic Cancer Federation (ELLOK) is a non-profit organization in Greece that unites and represents cancer patient associations from across the country. It advocates for the rights of all cancer patients, including those with common, rare, and pediatric cancers, and works to improve cancer care through public policy initiatives and by supporting its member associations. Founded in 2016, ELLOK has also been designated as the National Cancer Mission Hub for Greece, participating in the EU’s Europe’s Beating Cancer Plan. 

• Contributes to setting up the criteria for and publicising the open call for engagement funding (WP4)
• Contributes to identification of communication and training needs and strategies (WP6)
• Contributes to dissemination through diverse communities (WP6)

Contact details:

‘Katerina Nikitara, European Programs Manager’ euprograms@ellok.org

More information: https://ellok.org/en/

KATHOLIEKE UNIVERSITEIT LEUVEN (KU Leuven)

KU Leuven is a leading international research university where cutting-edge science drives high-quality education and innovation. Within PERIFORMANCE, KU Leuven brings essential ELSI (Ethical, Legal and Social Issues) expertise, covering comparative and regulatory analysis, systematic literature reviews, stakeholder and patient engagement, and preference studies. The university’s strong track record in IT/IP law, data protection, and the legal frameworks governing biobanking and biomedical research provides a solid foundation for the project’s analytical and methodological work.

• Lead partner for WP1 and WP2

Contact details:

  arthur.haerinck@kuleuven.be

Our future website can come here. I will let you know when it is ready, until then: https://gbiomed.kuleuven.be/english/research/50000715/52577001

SPANISH NATIONAL CANCER RESEARCH CENTRE (CNIO)

The CNIO is a Spanish public institution dedicated to cancer research, diagnosis and treatment, attached to the Instituto de Salud Carlos III (Ministry of Science and Innovation).  Ranked among the top 10 monographic cancer research centres in the world (Scimago report; Nature Index), the CNIO covers the entire R&D&I pathway, from basic to clinical research, in order to transfer the results quickly and efficiently to the National Health System and the pharmaceutical and biotechnology market. The CNIO Biobank has historically played a crucial role in the development of biobanks and collaborative network management at European and national level. 

• Contributes to WP1 and WP2
• Co-leads dissemination, communication, and training (WP6)

Contact details:

More information: https://www.cnio.es/