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ELSI

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July 13th, 2023

New podcast and video: ELSI Dialogues – An Introduction to the Belgian Biobank Legislation

Introduction Biobank legislation is not harmonised at the European Union level, and the Member States have taken considerably divergent approaches in how they reg ...read more


  • ELSI
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Barcelona, Spain 28 Jun 2023 29 Jun

Integration of the Sex and Gender Dimension in Life Sciences Research

Learn how to integrate the sex and gender dimension into your life sciences research at this free F2F Train-the-Trainer course organised by BSC (Bioinfo4Women ...read more


  • ELSI
  • News & Events
June 6th, 2023

Joint Statement: Health organisations define EHDS’ opt out required for life saving research

On 6 June, BBMRI-ERIC joins together with 31 other health stakeholders to share views on specific recommendations for a potential opt-out mechanism in the future ...read more


  • ELSI
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April 5th, 2023

Two new ELSI genomic research relevant publications released

The BBMRI-ERIC ELSI team are delighted to share two new genomic research relevant publications: Published in BioSocieties, ‘Post-identifiability in changing ...read more


  • ELSI
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February 15th, 2023

New podcast episode: ELSI Dialogues – Why ELSI Matters!

“I think an ELSI expert is often seen as a patch for projects from the natural sciences. You can ask this ELSI expert anything that has to be solved in a certai ...read more


  • ELSI
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October 21st, 2021

Call for abstracts for a workshop and edited volume on “Ethical, legal, and social issues of artificial intelligence in biobanking”

DEADLINE EXTENDED to 16 NOVEMBER 2021! Artificial intelligence (AI) systems and big data analytics in biobanking are essential components to deliver improved indi ...read more


  • ELSI
  • News & Events
July 13th, 2021

Call for Abstracts for Nordic Permed Law Symposium and European Journal of Health Law (EJHL) special issue on Genome Editing, Health Innovation and Responsible Regulation

Members of the BBMRI community are invited to submit abstracts for a symposium on genome editing on 3-4 November 2021 and a subsequent special issue on Genome Edi ...read more


  • ELSI
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Heidelberg 06 Jul 2021 06 Jul

Privacy Challenges in the Health Sector through Emerging Technologies

Join our colleague Dr. Ilaria Colussi on 6th July at the Marsilius-Bruckenseminar Sommersemester 2021 organised by the University of Heidelberg: “Privacy Ch ...read more


  • ELSI
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21 May 2021

GDPR harmonisation is the only way to protect cancer research: an ESMO webinar

Fragmented implementation and interpretation of the General Data Protection Regulation 2016/679 (GDPR) of the European Union (EU) at a local level are posing obst ...read more


  • ELSI
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14 Jun 2021

ELSI Webinar : GDPR and Biobanking – Book Review – Meet the Authors

The Springer Book “GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe” is available for open access since a couple ...read more


  • ELSI
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May 4th, 2021

Welcome Ilaria Colussi, our new Legal Officer!

In April 2021, we welcomed Ilaria Colussi to the BBMRI-ERIC Headquarters team. She is a Legal Officer within the ELSI Services & Research unit, mainly concent ...read more


  • ELSI
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April 16th, 2021

BBMRI-ERIC/Biobank Norway digital workshop: Hospital-based biobanks for biomedical research 

Biological samples collected from patients can potentially be used to advance medical research. European countries are progressively establishing procedures to sy ...read more


  • ELSI
  • News
  • News & Events
March 8th, 2021

Report on the assessment of the EU Member States’ rules on health data in the light of GDPR

In the context of the Single Framework Contract Chafea/2018/Health/03 between the EUHealthSupport Consortium and the Consumers, Health and Food Executive Agency ...read more


  • ELSI
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February 25th, 2021

Task Force Research Ethics Committees

Mission Statement The mission of the Task Force Research Ethics Committees (TF REC) is to map the procedures of national and regional RECs in order to identify th ...read more


  • ELSI
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17 Mar 2021 17 May

ELSI Webinar: Biobanking with children

On Wednesday 17 March 2021, 14:00 – 15:30 CET Biobanking with children is a practical vector of empowerment and engagement. Without having to expose the  ...read more


  • ELSI
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January 25th, 2021

ELSI Webinar – Futureproofing Biobanks’ Governance

On Tuesday, Feb 2, 2021 from 15:00 to 16:00 CET By Alessandro Blasimme, PhD – Department of Health Sciences and Technology, Health Ethics & Policy Lab ...read more


  • ELSI
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Webinar 19 Jan 2021

Webinar: Psychosocial characteristics of potential participants in biobanking – a study on the Polish population, by Jakub Pawlikowski (BBMRI.pl) 

Advances of biomedical research based on biobanks collecting human biological material are highly dependent on the successful recruitment and participation of hum ...read more


  • ELSI
  • News & Events
December 15th, 2020

Soon published – “GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe”

Springer Book “GDPR and Biobanking: Individual Rights, Public Interest and Research Regulation across Europe” – soon available open access! R ...read more


  • ELSI
  • News
  • News & Events
December 10th, 2020

Biobank Sweden’s Legal Helpdesk Representatives

The Swedish Research Council-funded research infrastructure Biobank Sweden supports healthcare providers and universities with medical faculties working towards n ...read more


  • ELSI
  • News
  • News & Events
  • Scientific Publications
December 9th, 2020

“The human body in scientific research and medical practice. A transdisciplinary approach”

BBMRI.pl has published a monograph “The human body in scientific research and medical practice. A transdisciplinary approach” edited by Jakub Pawlikow ...read more


  • ELSI
  • News & Events
  • Vacancies
December 2nd, 2020

Join BBMRI-ERIC as Legal Officer

BBMRI-ERIC is looking for a Legal Officer based in Austria to support our ELSI team on ethical, legal and societal issues in biobanking and biomolecular resources ...read more


  • ELSI
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Webinar 29 Oct 2020

Workshop: Ethically and socially responsible governance of research biobanks in the Baltic states

The aim of this workshop on 29 October 2020 is to exchange experience and discuss current ethical and social problems of research biobank governance in the Baltic ...read more


  • ELSI
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October 12th, 2020

Animation released on ELSI Services for Life Science Research Infrastructures

An animation commissioned by BBMRI-ERIC within the H2020 project CORBEL shows how Life Science Research Infrastructures can help researchers with ethical, legal a ...read more


  • ELSI
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Webinar 27 Oct 2020

Webinar: Ethical, Legal and Social Issues in human microbiome biobanking

Human microbiome research has the potential to increase our understanding of how health and disease are affected by the complex relationship between human, our dw ...read more


  • ELSI
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25 Nov 2020

Workshop: Looking back, going forward

Henrietta Lacks and the first immortalized human cell line, HeLa, have been influential in shaping both science and technology, from the development of the polio ...read more


  • ELSI
  • News & Events
October 6th, 2020

Biobank Sweden’s legal helpdesk

The Swedish Research Council-funded research infrastructure Biobank Sweden supports healthcare providers and universities with medical faculties working towards n ...read more


  • ELSI
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  • Webinars
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Online 01 Oct 2020

CINECA Webinar: Status Update Code of Conduct: Teaming up & Talking about it

The CINECA webinar series continues with a presentation by BBMRI-ERIC’s Head of ELSI Sergices & Research Dr. Michaela Th. Mayrhofer on the status of the ...read more


  • ELSI
  • News
  • News & Events
September 11th, 2020

Survey on Intellectual Property and Research

A lack of clarity has been identified around the topic of intellectual property rights (IPR) in the research context for the use of biological resources (i.e. bi ...read more


  • ELSI
  • News
  • News & Events
September 10th, 2020

Meet our Team – Mónica Cano Abadía

This week, we’re getting to know Mónica Cano Abadía, one of our ELSI Services Officers. ELSI stands for Ethical, Legal and Societal Issues.  Hi, Mónica! ...read more


  • ELSI
  • News
  • News & Events
August 24th, 2020

Meet our Team – Kaya Akyüz

This week, we’re getting to know Kaya Akyüz, one of our ELSI Services Officers. ELSI stands for Ethical, Legal and Societal Issues.  Hi, Kaya! What does a ...read more


  • ELSI
  • Events
  • Webinars
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Webinar 04 Jun 2020

Webinar: Ethical handling of incidental findings in research

Presenter: Eline Bunnik, PhD, Erasmus MC, BBMRI.nl Moderator: Melanie Goisauf, BBMRI-ERIC   In biomedical research involving human subjects, incidental fin ...read more


  • ELSI
  • Featured News (Startsite Bubble)
  • News
  • Webinars
May 18th, 2020

Recording of Webinar: COVID-19 and Ethical, Legal & Societal Issues

The recording of our webinar on COVID-19 and Ethical, Legal and Societal issues is now online! The webinar focused on the ethical issues encountered and addressed ...read more


  • ELSI
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Webinar 24 Apr 2020

Web Conference: COVID-19 and Ethical, Legal & Societal Issues

This web conference will first and foremost focus on the ethical issues encountered and addressed during the COVID-19 outbreak in relation to biobanking, focusing ...read more


  • ELSI
  • Events
  • Webinars
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Webinar 04 May 2020

CINECA Webinar: Code of Conduct: Teaming Up & Talking About It

The CINECA webinar series continues with a presentation by Dr. Michaela Th. Mayrhofer (BBMRI-ERIC) on Status Update Code of Conduct: Teaming up & Talking abou ...read more


  • ELSI
  • News
  • News & Events
  • Vacancies
February 27th, 2020

Job Vacancy: ELSI Services Officer (Graz)

BBMRI-ERIC is hiring an ELSI Services Officer to report to our headquarters in Graz, Austria. Download the vacancy note here or read on for details!   Job Ti ...read more


  • ELSI
  • Events
  • News & Events
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Brussels 23 Jan 2020

CPDP 2020 Data Protection and Artificial Intelligence

Brussels, Thursday 23 January 2020 at 08:45 – Area 42 – Registration at La Cave The panel is co-organized by the research infrastructure BBMRI-ERIC an ...read more


  • ELSI
  • Events
  • News & Events
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Graz, Austria 11 May 2020 15 May

Graz Biomedical Research Workshop

Graz Biomedical Research Workshop Dates: May 11-15, 2020 Location: Online workshop Note: Module 1 (May 11 – May 13) and Module 2 (May 13 – May 15) can be book ...read more


  • ELSI
  • Events
  • News & Events
  • Webinars
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28 Nov 2019

BBMRI-ERIC Webinar – Biobanks and registries – what’s the difference?

Title: Biobanks and registries – what’s the difference? Speaker: Dr Mary Wang, Fondazione Telethon in Italy Date and Time: 28 November 2019,  14:00-15:0 ...read more


  • ELSI
  • News
August 9th, 2019

Updates to the Code of Conduct for Health Research

Our ELSI team has been busy working on the Code of Conduct for Health Research website. Stay up-to-date by reviewing the latest today. ...read more


  • ELSI
  • Events
  • News & Events
  • Webinars
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Webinar 03 Apr 2019

BBMRI-ERIC Webinar – Material and Data Transfer Agreements (MTA/ DTA)

Title: Material and Data Transfer Agreements (MTA/DTA) Speaker: Dr Olga Tzortzatou, Biomedical Research Foundation of the Academy of Athens Date and Time: 3 Apri ...read more


  • ELSI
  • News
October 25th, 2018

Biobank Sweden Launches ELSI Helpdesk

The Swedish Research Council-funded research infrastructure Biobank Sweden supports healthcare providers and universities with medical faculties working towards n ...read more


  • ELSI
  • News
July 6th, 2018

FAQ on the GDPR available in Polish

We are pleased to announce that the FAQ on the GDPR, one of our most popular downloads, are available in Polish now. Click here for our FAQ on the GDPR in Polish ...read more


  • ELSI
  • Events
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Webinar 10 Jul 2018

CORBEL webinar

Title: The BBMRI-ERIC ELSI Helpdesk – Personalising ELSI Support Speaker: Jasjote Grewal (BBMRI-ERIC) Date: July 10, 2018 Time: 15:30 CEST The BBMRI-ERIC ELSI H ...read more


  • ELSI
  • News
May 28th, 2018

GBN workshop on legal regulations on incidental findings

Should biomaterial donors be informed of a BRCA mutation, which could trigger breast cancer, if this is discovered as an incidental finding in a study, for exampl ...read more


  • ELSI
  • News
May 23rd, 2018

BBMRI Poland holds national conference

Co-organised by the Independent Medical Sociology Unit, the Department of Ethics and Human Philosophy and the BBMRI.pl consortium, a national conference titled Th ...read more


  • ELSI
  • News
April 19th, 2018

GDPR: Final Guidelines on Consent and Transparency

The Article 29 Data Protection Working Party (WP 29) published the final Guidelines on Consent under Regulation 2016/679 (wp259) on Friday last week and the one ...read more


  • ELSI
  • News
April 18th, 2018

Data in Question survey receives 400 responses

What social, ethical and legal challenges do researchers and stakeholders in the field of biobanking face that impact practices related to the handling and sharin ...read more


  • ELSI
  • Events
  • Webinars
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Webinar 25 Apr 2018

BBMRI-ERIC Webinar – The GDPR and Health Research

Speaker: Dr Victoria Chico, University of Sheffield Time: 14:00-15:00 (Central European Summer Time) Summary: The enforcement date for the General Data Protection ...read more


  • ELSI
  • News
April 4th, 2018

Ethical review of biobank-based research in Italy

BBMRI.it, our Italian National Node, recently co-developed two key ELSI matrices for good practice in biobanking research. At the same time, an agreement with the ...read more


  • ELSI
  • News
February 6th, 2018

EDPS Ethics Advisory Group 2018 report

The European Data Protection Supervisor Ethics Advisory Group has published a report on the GDPR, identifying and describing “the most crucial issues for th ...read more


  • ELSI
  • News
January 26th, 2018

Call for Examples ‘How Biobanking Makes a Difference in Society’

How does biobanking help to improve individual health(care)? What is the added value of biobanking? What has been achieved and made possible as a result of bioba ...read more


  • ELSI
  • News
January 24th, 2018

BBMRI-ERIC replies to public consultation

BBMRI-ERIC has recently submitted its comments on the Article 29 Working Party Guidelines on Consent under Regulation 2016/679 (wp259) and Transparency under Regu ...read more


  • ELSI
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Brussels / Belgium 26 Jan 2018

Code of Conduct Forum session at CPDP 2018

Organised by BBMRI-ERIC Industry – Academia – Healthcare professionals   CPDP, the Computers, Privacy and Data Protection 2018 conference is taking place ...read more


  • ELSI
  • News
December 21st, 2017

Survey on ELSI challenges in biobank-based research

The Data in Question survey consists of 25 questions on some of the challenges of obtaining and sharing biological samples and data for research purposes in bioba ...read more


  • ELSI
  • News
December 21st, 2017

Public Consultation on WP29 Guidelines on Consent (GDPR)

The Article 29 Working Party has adopted a document titled “Guidelines on Consent under Regulation 2016/679” to clarify the requirements of the EU GDP ...read more


  • ELSI
  • News
December 21st, 2017

Code of Conduct for Health Research

The Drafting Group met for the second time face to face on 22-23 November 2017 in Paris. The aim of the meeting was to first and foremost to share findings and f ...read more


  • ELSI
  • Events
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Paris / France 20 Feb 2018

ETHICAL REVIEW FOR BIOBANK-BASED RESEARCH

The growing complexity of the use of existing data highlights some gaps in the ethical review model currently in use across Europe. Reports from scientists highli ...read more


  • ELSI
  • News
November 30th, 2017

GDPR Code of Conduct for Health Research and Implications for FP9

BBRMI-ERIC has been working tirelessly to understand the future of health research in the changing panorama of data governance and EU funding. As part of this eff ...read more


  • ELSI
  • Events
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Brussels / Belgium 06 Nov 2017

Seminar: GDPR Code of Conduct for Health Research and Implications for FP9

BBMRI-ERIC is hosting a seminar to assess the impact of the GDPR on FP9 health research and examine how the Code of Conduct for Health Research being developed by ...read more


  • ELSI
  • News
September 22nd, 2017

BBMRI-ERIC Horizon scanning survey: 5 quick questions to help us help you

The BBMRI-ERIC Common Service ELSI has prepared a very brief survey to find out what you think are the important ethical, legal, and policy issues facing biobanki ...read more


  • ELSI
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Bordeaux / France 15 May 2017 17 May

Inserm workshop 246

Management and Reuse of Health Data: Methodological Issues   This workshop will provide insights and tools regarding open data, FAIR data management, data d ...read more


  • ELSI
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Vienna / Austria 05 Apr 2017

BIOETHICS SYMPOSIUM

The Bioethics Symposium at IMBA will discuss the main challenges arising from recent advancements in life sciences. New technologies like stem cell research, orga ...read more


  • ELSI
  • News
March 8th, 2017

Summary Report on the BBMRI-ERIC Working Meeting on Health and Life Sciences GDPR Code of Conduct

On 1 February 2017, BBMRI-ERIC held a working meeting in Brussels, bringing together around 30 representatives from the European biological and medical science r ...read more


  • ELSI
  • News
March 6th, 2017

Answers to FAQs on EU GDPR – New Version Available Now

On May 24, 2016, the Regulation of the European Parliament and of the Council on the Protection of Natural Persons with regard to the Processing of Personal Data ...read more


  • ELSI
  • News
January 19th, 2017

New OECD Council of Ministers Recommendations on Health Data Governance

The OECD Health Ministers welcomed the Recommendation of the OECD Council on Health Data Governance at their meeting in Paris on 17 January 2017. The Recommendati ...read more


  • ELSI
  • News
December 19th, 2016

News about GDPR Implementation and Guidance from the Art.29 DPWP

The Article 29 Working Party (“WP29”) has issued new guidance on three important aspects of the new General Data Protection Regulation (“GDPR”), which com ...read more


  • ELSI
  • News
December 19th, 2016

Revised version of the CIOMS Ethical Guidelines for Human Research

The Council for International Organizations of Medical Sciences (CIOMS) last week finalized the latest revision to its ethical guidelines for health research invo ...read more


  • ELSI
  • News
October 27th, 2016

New WMA Declaration of Taipei on HDB published

On behalf of the CS ELSI Task Force on International Organisation Policy Assessment and Monitoring Task Force (TF IO Policy), we inform you that the draft WMA dec ...read more


  • ELSI
  • News
October 17th, 2016

Primer on Law and Ethics for Researchers involved in Biobanking

News from B3Africa: In most jurisdictions, researchers have a legal, as well as a moral, duty to ensure that their research adheres to national standards and reg ...read more


  • ELSI
  • News
May 13th, 2016

COE ADOPTED REC ON BIOLOGICAL MATERIALS

The Committee of Ministers of the Council of Europe adopted a new Recommendation on research on biological materials of human origin on 11 May 2016. The current ...read more


  • ELSI
  • News
May 10th, 2016

FAQs on the General Data Protection Regulation

On 14 April 2016, the European Parliament adopted the Regulation of the European Parliament and of the Council on the Protection of Natural Persons with regard ...read more


  • ELSI
  • News
April 14th, 2016

EU GENERAL DATA PROTECTION REGULATION ADOPTED THIS WEEK

On Thursday April 14, the European Parliament has adopted the EU General Data Protection Regulation (GDPR). The legislation will likely come into force in the sp ...read more


  • ELSI
  • News
April 6th, 2016

A REFERENCE BOOK ON ETHICS AND LAW FOR HEALTH PROFESSIONALS INVOLVED IN THE USE OF HUMAN BIOLOGICAL SAMPLES

biobanques de recherche or Ethics and Regulation of Research Biobanks”, written in French, in collaboration with the BIOBANQUES Ethics and Regulation Depar ...read more


  • ELSI
  • News
March 4th, 2016

ELSI 2.0 + EUCELLEX PROJECT SATELLITE SYMPOSIUM BURSARIES AVAILABLE

*Bursaries for Early Career Researchers now available* Dear All, We are delighted to announce that a limited number of bursaries are now available to subsidise e ...read more


  • ELSI
  • Events
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Edinburgh / Scotland 14 Jun 2016

ELSI2.0 AND EUCELLEX PROJECT SATELLITE SYMPOSIUM AT THE INTERNATIONAL ASSOCIATION OF BIOETHICS

ELSI 2.0  (https://elsi2workspace.tghn.org/)  and EUCelLEX (https://www.eucellex.eu/) Project Joint Symposium ‘Exploring International Policy Developmen ...read more


  • ELSI
  • News
December 17th, 2015

BBMRI-ERIC WELCOMES THE DETAILS ON THE GENERAL DATA PROTECTION REGULATION

“BBMRI-ERIC has played a vital role to improve the GDPR“, says BBMRI-ERIC’s Director General Prof. Jan-Eric Litton. BBMRI-ERIC has met with sev ...read more


The BBMRI-ERIC Quality Management service is co-funded within ADOPT BBMRI-ERIC, a project that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 676550.

The BBMRI-ERIC Quality Management service is co-funded within SPIDIA4P, a project that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 733112.

The website was co-funded within ADOPT BBMRI-ERIC, a project that has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 676550.

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Mail: contact@bbmri-eric.eu

 

 

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