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

Pascale Baden