He is also Member of: the Coordinating Group at Enpr-EMA, the ACT EU multi- stakeholder platform Advisory Group, the international Children Advisory Network ( iCAN ) Advisory Board, the AICRO Board of Directors, the EUCROF Paediatric WG, the EFGCP Paediatric Medicines WG, the IRDiRC patient engagement WG, and Chair of the TEDDY Young Patient Engagement WG.

He is involved in several projects aimed at enhancing research for paediatric and rare diseases patients (i.e. OrphaDev4Kids aimed to foster the development of paediatric medical devices, ERDERA the EU Rare Disease Research Partnership, ERAMET and INVENTS, aimed at developing innovative trial methodologies for unmet needs) and is Coordinator of EPTRI (European Paediatric Translational Research Infrastructure) aimed to enhance technology-driven paediatric research in drug discovery and early development phases to be translated into clinical research and paediatric use of medicines, diagnostics and devices.

He has been Trial Leader of two EU-funded multinational paediatric clinical trials between 2011–2017 and project coordinator of the EU-funded project DEEP – DEferiprone Evaluation in Paediatrics (FP7 GA 241683), involving 32 clinical centers from European and Mediterranean countries, and also involved in relevant groups/projects/platforms aimed at enhancing clinical trials for paediatric and rare diseases patients: WP3 Leader within PedCRIN – Paediatric Clinical Research Infrastructure Network (H2020 GA 731046); c4c – Network for European Clinical Trials for Children (H2020 GA 777389); EJP RD – European Joint Programme on Rare Diseases (H2020 GA 825575).

In this project, she is responsible for the development of a comprehensive programme of education and training on RD research, aimed at building the capacity of young researchers in the fundamentals of RD research (from basic to clinical) through several levels of training.

Before joining EURORDIS, she worked in the education, research and project management field. During her PhD, she focused on developing strategies to enhance creativity and critical thinking in higher education through active learning methodologies. She has also worked as a project manager and pedagogical consultant in European projects on Citizen Science, Collaborative Research and Responsible Research and Innovation (RRI), where she developed several  training programmes and materials. She has been a university and high school teacher for many years. She holds a Bachelor in Human Biology, a MSc in Education and a PhD in Science Education

Gemma is based in Barcelona and speaks Catalan, Spanish, English and some French.

Prof. Manika is Medical Director of a CRO – Clinical Validation from Biopharmaceutical Findings(CVBF AL) in Tirana since 2017.
She has been involved in various educational and research roles, including serving as Vice Dean for Master Program in Faculty of Medical and Technical Sciences, in University of Medicine. She held a position of Head of the Department of Clinical Sciences in the same institution, in a four year period of time.
Prof Manika Kreka has also been involved in writing articles and has led research (Clinical Trials as Principal Investigator) in Thalassemia and Haemoglobinopathies field, in internationally level. Her contributions to the medical field are recognized through her active participation in scientific sessions and round tables , as well as her extensive body of work in the pediatric and hematology field.

Since 2013 Pr Semeraro is responsible of the Center of Clinical Investigation in Necker Hospital in Paris (greater pediatric hospital in France) where she is in charge of more than 100 clinical trials from the phase 1 to the phase 4 mostly in the field of rare diseases. Her clinical research activity and translational research is particularly focused in developing gene therapy for rare diseases.

Pr. Semeraro’s work extends beyond the laboratory and clinic, as she is actively involved in teaching and mentoring the next generation of medical professionals. She is mostly involved in the education of clinical research and gene therapy in the Paris Cité University and she is in charge of several educational programs for clinical research training. Pr Semeraro is principal Investigator or scientific director of several clinical trials, co-coordinator of the CLEIO network for advanced treatments, member of the French clinical research network (PedStart) and review editor for numerous journals in the field of immunology, oncology and gene therapy.

She is also involved in the Development and Networking activities and is Team Leader of the first YPAG (Young People Advisory Group) in Albania named KIDS Albania part of iCAN (International Children’s Advisory Network). In this role, she promotes the involvement of young people in paediatric research and healthcare decision making.

She has been Member of Clinical Trial Center Working Group, EUCROF (European CRO Federation) until 2024. She holds a master’s degree in Pharmacy from the Faculty of Pharmacy at the University of Medicine in Tirana (Albania).

Consultant/expert of the Council of Europe (2020-2025) in charge of drafting the Guide on children participation in decisions about their health, her research focuses on developing participatory methodology including children/future generation also in decisions related to digital life (in collaboration with CNIL -French Data Protection Authority).

Former member of the EMA Paediatric Committee (PDCO), Annagrazia ALTAVILLA is expert/ethics advisor of several EU/IMI founded projects. She is author of a book and several national and international publications and reports for the European institutions.

Speaker invited in more than 100 conferences in 21 countries and in European Institutions, she also lectured in Italian, French, Spanish, Belgium, and Polish universities. Former Chair of TEDDY Network and member of the Ethics Committee of Santé Publique France, she is member of the Scientific and Ethics committee of the CAD (Collecteur and Analyseur de données set up within France Genomics Plan). She is also member of the European Association of Health Law (EAHL) (Board of Directors, 2017-2025) and member of the WALM (World Association of Medical Law).

Since 2015, she has also been coordinating the NeuroSphinx national network for rare diseases, which focuses on rare pelvic and spinal cord malformations with sphincter and/or neurological involvement.

Since her PhD on the Currarino syndrome, she continued monitoring and studying the phenotype, genotype, and clinical course of these patients.
In general, she is particularly interested in the transition of young teenagers to adulthood, the establishment of adult care networks for MAREP patients, and more broadly, life trajectories within the framework of Axis 1 of the French National Rare Disease Plan 4 (PNMR4), which I co-lead.
Her main research topic currently focuses on clinical linguistics, and particularly the study of inner speech and the process of subjectivation (and its alterations) of patients followed in the MAREP center and its network.
She also supervise a research project in collaboration with the National School of Decorative Arts (ENSAD, Paris) on the development of tools to help children aged 3 to 6 years develop awareness of their perineal area.

She works in close collaboration with Necker-Enfants Malades Hospital, particularly with the MAREP Rare Disease Reference Centre and Dr Célia Crétolle, paediatric surgeon and coordinator of the centre. Her work focuses on the development of embodied, visual and pedagogical tools for children with anorectal malformations, within therapeutic education and hospital care contexts.

Dr. Barcia has contributed to the identification and characterization of numerous genetic causes of developmental and epileptic encephalopathies and is actively involved in genomic diagnostics, multidisciplinary care, and research programs aimed at improving the diagnosis and management of rare neurological disorders. She collaborates with national and international networks dedicated to rare diseases and precision medicine.

A dedicated advocate for people living with rare and undiagnosed diseases, Eirini actively contributes to national, European and international initiatives aimed at strengthening patient engagement, advancing health policy and promoting equitable access to care. In 2024, she was selected as a EURORDIS Young Ambassador, representing the voice of young patients at  European events and policy forums.

She is a graduate of the Rare Diseases Academy of Rare Diseases Greece and is currently participating in the EUPATI Training Programme through the Greek Patients’ Association, further strengthening her expertise in medicines development and patient involvement. Eirini also serves as a Reviewer in the Global Network for Rare Diseases (GNRD) Working Group on Care Pathways for Rare Diseases International, contributing to the development of more inclusive, patient-centered and globally relevant care pathways for people living with rare diseases.

Prof Turner drove the setup of the 20-country pan-European paediatric Clinical Trials Network funded by IMI2, conect4children (c4c) and is CEO of the Dutch non-profit that was spun out of the c4c project. 

He chaired the European Network of Paediatric Research at the European Medicines Agency for six years. He has contributed to the development of three European research infrastructures and one in the USA. He is a European Co-Director of the International Neonatal Consortium, hosted by the Critical Path Institute. He was senior co-Editor of the landmark textbook “Essentials of Translational Pediatric Drug Development” (2024, Elsevier) and was President of the European Society for Developmental, Perinatal and Paediatric Pharmacology (2019 – 2022).

She currently manages the Scientific Secretariat of TEDDY, European Network of Excellence for Paediatric Clinical Research (TEDDY Network). In addition, Emanuela is part of the Central Management Office of the European Paediatric Translational Research Infrastructure (EPTRI), where she supports central coordination activities