Leading Team
Learn more about ERDERA structure and governance structure here!
Carlos Almeida Pereira
(Inter)national capacity alignment co-Leader
Carlos Almeida Pereira
Sonja Van Weely
(Inter)national capacity alignment co-leader
Sonja Van Weely
Laetitia Gaspar
Acceleration hub co-leader
Laetitia Gaspar
Alexandre Méjat
Acceleration hub co-leader
Alexandre Méjat
Luis Pereira de Almeida
Acceleration hub co-leader
Luis Pereira de Almeida
Anton Ussi
Acceleration hub co-leader
Anton Ussi
Holm Graessner
Clinical Research Network co-leader
Holm Graessner
Franz Schaefer
Clinical Research Network co-leader
Franz Schaefer
Ronald Cornet
Data Services Hub co-leader
Ronald Cornet
Ana Rath
Data Services Hub co-leader
Ana Rath
Dimitrios Athanasiou
Data Services Hub co-leader
Dimitrios Athanasiou
Roseline Favresse
Education and Training in RD research co-leader
Roseline Favresse
Toni Andreu
Expertise Services Hub co-leader
Toni Andreu
Viviana Giannuzzi
Expertise Services Hub co-leader
Viviana Giannuzzi
Rima Nabbout
Expertise Services Hub co-leader
Rima Nabbout
Florence Guillot
RD Funding co-leader
Florence Guillot
Ralph Schuster
RD Funding co-leader
Ralph Schuster
Annalisa Landi
Expertise Services Hub co-leader
Annalisa Landi
Birute Tumiene
Education and Training in RD research co-leader
Birute Tumiene
Eva Molero
Transversal co-leader
Eva Molero
Andrii Loboda
Sumy State University
Andrii Loboda
Dariusz Adamczewski
CTF Europe (Children’s Tumor Foundation)
Dariusz Adamczewski
Dorota Zgodka
Rare Diseases Initiative (IVI)
Dorota Zgodka
Eleni Grigorakaki
MSD Greece
Eleni Grigorakaki
Evrim Unsal
Mikrogen Genetic Diagnosis Laboratory
Evrim Unsal
Günes Uyar
Yildirim&Uyar Law Firm
Günes Uyar
James Levine
Fondation IPSEN
James Levine
José Willemse
Dutch Liver Patients Association
José Willemse
Lina Basel Salmon
Beilinson Hospital
Lina Basel Salmon
Rocio Acuna-Hidalgo
Nostos Genomics GMBH
Rocio Acuna-Hidalgo
Darius-Jean Namdjou
Phortas GmbH
Darius-Jean Namdjou
Lucy Collins Stack
Rare Diseases Ireland
Lucy Collins Stack
Timothy Barrett
University of Birmingham
Timothy Barrett
Úna Keightley
Beacon Hospital
Úna Keightley
Birgitta Hedin
Chiesi Rare Diseases
Birgitta Hedin
Daniele Palumbo
CHAMP1 Research Foundation
Daniele Palumbo
Hélène Tran
Servier
Hélène Tran
Remco de Vrueh
Lygature
Remco de Vrueh
Thomas Bols
PTC Therapeutics
Thomas Bols
Flora Musuamba Tshinanu
University of Namur
Flora Musuamba Tshinanu
Hugh Dawkins
Australia
Principal Representative
Hugh Dawkins
Kristen Nowak
Australia
Permanent Deputy
Kristen Nowak
Doris Lucvshyn
Austria
Permanent Deputy
Doris Lucvshyn
Joke Wuyts
Belgium
Principal Representative
Joke Wuyts
Christopher McMaster
Canada
Principal Representative
Christopher McMaster
Christina Miltiadous
Cyprus
Principal Representative
Christina Miltiadous
Maria Pantelidou
Cyprus
Permanent Deputy
Maria Pantelidou
Seppo Yla-Herttuala
Finland
Principal Representative
Seppo Yla-Herttuala
Petri Makinen
Finland
Permanent Deputy
Petri Makinen
Oleg Kvlividze
Georgia
Principal Representative
Oleg Kvlividze
Tinatin Tkemaladze
Georgia
Permanent Deputy
Tinatin Tkemaladze
Richard Mitreiter
Germany
Permanent Deputy
Richard Mitreiter
Marta Szegedi
Hungary
Permanent Deputy
Marta Szegedi
Ayal Hendel
Israel
Permanent Deputy
Ayal Hendel
Annamaria De Luca
Italy
Principal Representative
Annamaria De Luca
Simona Grasso
Norway
Principal Representative
Simona Grasso
Asbjørg Stray-Pedersen
Norway
Permanent Deputy
Asbjørg Stray-Pedersen
Tadeusz Bednarczyk
Poland
Principal Representative
Tadeusz Bednarczyk
Rita Cavaleiro
Portugal
Permanent Deputy
Rita Cavaleiro
Maria Puiu
Romania
Principal Representative
Maria Puiu
Alice Grigore
Romania
Permanent Deputy
Alice Grigore
Andrej Janžič
Slovenia
Principal Representative
Andrej Janžič
Daniel Ruiz-Iruela
Spain
Principal Representative
Daniel Ruiz-Iruela
Isabel Jado-García
Spain
Permanent Deputy
Isabel Jado-García
Clémence Le Cornec
Switzerland
Permanent Deputy
Clémence Le Cornec
Ruth Ladenstein
PaedCan
ERN Representative
Ruth Ladenstein
Antonio Pérez Martínez
TransplantChild
ERN Representative
Antonio Pérez Martínez
Jacques Demotes
ECRIN
EU Research Infrastructure
Jacques Demotes
Jens Habermann
BBMRI-ERIC
EU Research Infrastructure
Jens Habermann
Birgitte Rode Diness
Denmark
Principal Representative
Birgitte Rode Diness
Christina Teik Christensen
Denmark
Permanent Deputy
Christina Teik Christensen
Ebe Nomm
Estonia
Principal Representative
Ebe Nomm
Heli Paluste
Estonia
Permanent Deputy
Heli Paluste
Edward Nieuwenhuis
Netherlands
Permanent Deputy
Edward Nieuwenhuis
Iveta Hermanovska
Slovakia
Principal Representative
Iveta Hermanovska
Tatiana Foltanova
Slovakia
Permanent Deputy
Tatiana Foltanova
Laima Ambrozaityte
Lithuania
Principal Representative
Laima Ambrozaityte
Rasa Traberg
Lithuania
Permanent Deputy
Rasa Traberg
Louise Bicknell
New Zealand
Principal Representative
Louise Bicknell
Stephanie Hughes
New Zealand
Permanent Deputy
Stephanie Hughes
Madara Auzenbaha
Latvia
Principal Representative
Madara Auzenbaha
Ieva Micule
Latvia
Permanent Deputy
Ieva Micule
Madeleine Durbeej-Hjalt
Sweden
Principal Representative
Madeleine Durbeej-Hjalt
Bengt Persson
Sweden
Permanent Deputy
Bengt Persson
Magda Chlebus
EFPIA
Industry Representative
Magda Chlebus
Victor Maertens
EUCOPE
Industry Representative
Victor Maertens
Milan Macek
Czech Republic
Principal Representative
Milan Macek
Anne-Sophie Lapointe
France
Permanent Deputy
Anne-Sophie Lapointe
Naima Fdil
Morocco
Principal Representative
Naima Fdil
Oonagh Ward
Ireland
Principal Representative
Oonagh Ward
Radka Kaneva
Bulgaria
Principal Representative
Radka Kaneva
Petia Stratieva
Bulgaria
Permanent Deputy
Petia Stratieva
Sonya Pavlovic
Serbia
Principal Representative
Sonya Pavlovic
Stephanie Croker
United Kingdom
Principal Representative
Stephanie Croker
Victoria Lund
United Kingdom
Permanent Deputy
Victoria Lund
Vicky McGrath
Rare Diseases Ireland
Patients Representative
Vicky McGrath
Michela Onali
GlI Equilibristi HIBM
Patients Representative
Michela Onali
Anissa Bounabi
Assistant Scientific Coordinator
Anissa Bounabi
Gustavo Insaurralde
Administrative/Finance
Gustavo Insaurralde
Raisa Simoes
Policy Officer
Raisa Simoes
Odile Heitz
Office Manager
Odile Heitz
Baptiste Eluard
Project Manager
Baptiste Eluard
Pauline Adam
Project Manager
Pauline Adam
Pauline has a double Master’s degree in international governance from Institut d’Etudes Politiques de Grenoble (France) and International University of Rabat (Morocco). She had first internship experiences in Senegal and Morocco, working for NGOs involved in linking research with public policies, local stakeholders’ capacity building, and topics related to public health. During the pandemic, she worked on medical human ressources support operations at the Ministry of Health Crisis Center, and then as a scientific project manager in the COVID international surveillance team at Santé Publique France.
Helin Ruf-Ucar
Project Manager
Helin Ruf-Ucar
Xavier Merit
Project Manager
Xavier Merit
Başak Uysal
Project Manager
Başak Uysal
Clément Moreau
Project Manager
Clément Moreau
Clément has a Master’s degree in European and International Project Management from the University of Nantes (France). After a first internship experience in project management and awareness of European issues at the Association Jean Monnet in 2019, he worked for two years at University Côte d’Azur (UCA, Nice, France), where he was the manager of the Erasmus+ Capacity Building projects (ERASMUS+, KA2) involving UCA.
Maica Llavero
Co-head of EU-Funded Projects
Maica Llavero
Maica spent six years working as a researcher at The Roslin Institute in Edinburgh, UK, initially as a PhD candidate and later as a postdoctoral research fellow. Her research focused on potential drug targets and biomarkers for neurodegenerative diseases. In collaboration with international universities, Maica contributed to over ten biomedical research projects, some of which were presented at various conferences and published in high-impact peer-reviewed journals. Additionally, she gained experience in identifying and preparing grant proposals to expand her team and further her research.
In 2018, Maica’s career geared towards innovation management in the private sector when she worked for two years as a consultant in London. There, she assisted UK companies, mainly SMEs and start-ups, in obtaining funding for innovation through public grants and R&D tax claims. She developed expertise in the biotech, med-tech, AI, and software sectors. Additionally, she led the project management activities and managed the Innovation team’s client portfolio.
Anna Llobet
Project Manager
Anna Llobet
Anna’s career in the field of European Funding project management began at the Pompeu Fabra University (UPF), where she provided support to the Project Management team of EUTOPIA 2050, a part of the European Universities initiative which is funded by Erasmus+. She was extensively involved in coordinating, planning, and implementing the project’s large-scale, multilingual, and multi-stakeholder tasks.
During her tenure at UPF, Anna developed a strong interest in the financial management of European Commission projects. She played a key role in the successful bid of the European Universities pilot project, helping secure continued funding from the European Commission. Additionally, she is skilled in managing the EC’s Funding and Tenders portal.
Marina Derch
Project Manager
Marina Derch
Gisela Pairó
Head of Communications
Gisela Pairó
Jordi Vaqué
Communications Officer
Jordi Vaqué
Freya Sentmartí
Communications Officer
Freya Sentmartí
Freya holds a degree in Advertising and Public Relations from the University of Girona, including a year abroad at NHL Stenden in the Netherlands. She went on to complete an MSc in Strategic Communication and Public Relations at Pompeu Fabra University and the University of Stirling.
Her master’s thesis explored Ecolinguistics in governmental public relations, focusing on environmental sustainability messaging. In 2024, she took part in the European Green Activist Training, gaining insight into politics and collaborative engagement.
Freya has developed her expertise through experience at Ogilvy, a global communications agency, and the Alicia Foundation, a centre for food innovation and sustainability. She joined Teamit in 2024 as a Junior Communications Officer, where she contributes to impactful communication strategies within European research and public health projects.
Daria Julkowska
ERDERA Scientific Coordinator
Daria Julkowska
Daria Julkowska holds a PhD in molecular biology and completed postdoctoral research in cellular biology at Institut Pasteur (Paris). She also holds an MSc in Research Management (Paris Dauphine) and has extensive training in EU research policy and communication. Active in the rare disease field since 2010, she coordinated the European Joint Programme on Rare Diseases and is currently Scientific Coordinator of ERDERA, a partnership uniting over 180 institutions across 37 countries. She has built large-scale, multi-stakeholder collaborations spanning academia, funders, industry, clinicians, and patients. She chaired a European Commission Expert Group on partnerships and has received major distinctions, including the EURORDIS Black Pearl Award (2020) and the Prix INSERM (2024).
Hélène Le Borgne
Policy Officer at European Commission
Hélène Le Borgne
Hélène joined in 2010 the European Commission where she worked firstly in the Directorate-General in charge of health policies (DG SANTE), in particular in the team supporting the establishment of the 24 European Reference Networks (ERNs) on rare diseases. She moved to DG Research & Innovation in January 2020, Unit “Health innovations and ecosystems”, to work on rare disease (RD) research, where she supported the implementation of the European Joint Programme on Rare Diseases (EJP RD) and collaborative research projects to improve diagnostics and therapies for RD patients. She helped preparing, and still support, the European Partnership on Rare Diseases, ERDERA.
Christina Kyriakopoulou
Scientific Policy Officer at the European Commission
Christina Kyriakopoulou
Christina Kyriakopoulou works as a Policy Officer at the Directorate General for Research and Innovation of the European Commission, Directorate People: Health and Society and the unit Health Innovations and Ecosystems. She holds a PhD in biochemistry and she held postdoctoral positions in molecular biology and genome analysis before joining the European Commission 20 years ago.
Christina contributes to the design and the development of the work programmes of the European Union’s framework programmes for research and innovation for health collaborative research in the domains of rare diseases, health data, including in-silico models and artificial intelligence for health.
Merve Polat
Türkiye
Principal Representative
Merve Polat
Cédric Morana
Permanent Deputy
Belgium
Cédric Morana
Oliver Mayer-Weber
Austria
Principal Representative
Oliver Mayer-Weber
Anne Cécile Desfaits
Canada
Permanent Deputy
Anne Cécile Desfaits
Katerina Slaba
Czech Republic
Permanent Deputy
Katerina Slaba
Inês Amado
France
Principal Representative
Inês Amado
Smita Sutrave
Germany
Principal Representative
Smita Sutrave
Dr. Elod Nemerkenyi
Hungary
Principal Representative
Dr. Elod Nemerkenyi
Asher Salmon
Israel
Principal Representative
Asher Salmon
Elisabeth Heinz
Luxembourg
Permanent Deputy
Elisabeth Heinz
Fatima Zahra Ben Fouila
Morocco
Permanent Deputy
Fatima Zahra Ben Fouila
Wendy van Zelst-Stam
The Netherlands
Principal Representative
Wendy van Zelst-Stam
Dagmara Robakowska-Hyżorek
Poland
Permanent Deputy
Dagmara Robakowska-Hyżorek
Anabela Isidro
Portugal
Principal Representative of Portugal in the Goberning Board and ERDERA (Inter)national capacity alignment co-leader
Anabela Isidro
Peter Volasko
Slovenia
Permanent Deputy
Peter Volasko
Pascale Baden
Luxembourg
Principal Representative