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. 

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 for the treatment of children with rare diseases) and is Coordinator of EPTRI (the 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 is Board Member at TEDDY – European Network of Excellence for Paediatric Research, Member of the Coordinating Group at Enpr-EMA, Member of the ACT EU multi-stakeholder platform Advisory Group, Member of the international Children Advisory Network (iCAN) Advisory Group.  

He trained through EURORDIS and the EUPATI Patient Expert Course, later serving on its Course Committee and founding the Greek EUPATI Liaison Team. In Greece, he represented Duchenne patients at MDA Hellas, co-founded Rare Diseases Greece, and helped build a strong national and international patient advocacy network. He has served on the boards of the World Duchenne Organization, the European Patients’ Forum, and 95 Rare Alliance Greece. 

Dimitrios collaborates with regulators, HTA bodies, industry, and academia to promote access to care and therapies for rare diseases. He has held roles in EURORDIS EPAC/TAG, EFGCP, DIA, and TREAT-NMD’s TACT. Since 2014, he has been an EMA patient expert for DMD, participating in regulatory consultations, and served on EMA’s PDCO until 2023. He is currently a member of the EMA’s Patients’ and Consumers’ Working Party (PCWP)

Till her retirement in 2011,  Professor Savvopoulou was director of the metabolic unit of the 1 st Pediatric Department, AUTH which was the referral center for inherited metabolic diseases (IMDs) in Northern Greece.  She participated in multiple research projects pertaining to IMDs e.g. the transnational investigation of IMDs in Cyprus and Greece, Research and diagnosis for Purine and Pyrimidine IMDs in Europe (EC project BMH4-CT08-3079), the  European registry and network for Intoxication type Metabolic Diseases (E-IMD), the “European network and registry for Homocystinurias and methylation Defects” (E-HOD) the “Think ammonia” campaign “Think ammonia -you can save lives”, participation in research on the status and progress of  newborn screening, diagnosis and management of inherited metabolic disorders in southern mediterranean countries. Acknowledgment of the educational role of KRIKOS ZOIS was a funding award from the SSIEM Society for Study of Inborn Errors of Metabolism. On her initiative and with the support of 29 families,  “KRIKOS ZOIS”, the Panhellenic Advocate for IMDs  was founded in 2007 in Thessaloniki

She is completing research in the School of Health and Human Performance at Dublin City University, focusing on “The Lived Experience of the Irish PKU Community”. She holds a MSc in Exercise Physiology from Trinity College Dublin and is a graduate of the IPPOSI Patient Education Programme with specific training in clinical trials, health technology assessment and medicinal product / device safety and pharmacovigilance. Her leadership has been instrumental in developing Ireland’s first care pathway for Phenylketonuria and representing patient perspectives in health technology assessments. Bernadette has engaged with the Food Safety Authority of Ireland, Office of the Ombudsman and the Departments of Social Protection, Education and Health to highlight the challenges and unmet needs of PKU and allied metabolic disorders. She has addressed Dáil Éireann (Irish Parliament) and participated in EU Commission and EU Parliament discussions advocating for holistic, individualised and lifelong care. 

As a speaker, Bernadette has appeared on national media, is a frequent guest lecturer on university programmes and has delivered a TEDx talk titled ‘The Empowering Role of Advocacy – a Parent’s Perspective’ aimed at raising awareness, understanding and compassion around PKU. Her unique combination of academic rigor and lived experience makes her a powerful voice in rare disease advocacy, health policy development, and interdisciplinary health education.

During her PhD, she conducted studies on the intracellular trafficking and activity of renal cotransporters involved in hypertension, and characterised novel mutations in the nuclear Lamin A/C. She then undertook a six-year postdoctoral fellowship in the field of neuroscience, investigating genetic and environmental factors associated with mental illnesses.

She is currently based at the Fondazione per la Ricerca Farmacologica Gianni Benzi, where she actively contributes to international collaborative research projects focused on rare and paediatric diseases. Her work also includes the preparation and implementation of regulatory procedures, as well as drafting research proposals for funding opportunities.

He is involved in curricular learning processes in high schools and middle schools since 2016, tutoring students on different topics such as gamification, storytelling, story planning and digital painting, mainly relying on Project Base Learning (PBL) processes to achieve the best results. 

He has experience working with companies, delivering sessions to improve teamwork through conflict resolution and team building exercises, at times designing simulation games and using the tool of roleplay to draw from the inner, and sometimes hidden, creativity of participants. 

Francesco is managing KIDS Bari’s activities, setting monthly meetings and managing a permanent online space where the young community can meet anytime and work on a project they are passionate about.

Later, she has gained a deeper understanding of patient advocacy and international patient organizations/associations by being the communication manager at the European Reference Network (ERN) ReCONNET, the European Joint Program on Rare Diseases (EJP RD) and the International Rare Diseases Research Consortium (IRDiRC); she was a communication consultant for the European Pediatric Translational Research Infrastructure (EPTRI) and CVBF, she also supported the patient advocacy initiatives carried on by TEDDY Network.

In parallel, Dr Passeri increased her research competences by becoming a scientific expert for the European Union (EU) – REA program – and a Medical and Scientific Advisory Board of the Ghana Initiative for Rare Diseases as well as a healthcare professional expert at EMA. Furthermore, she extended her advocacy, policy, and leadership skills by being i) the vice coordinator of Comitato Nazionale Malattie Rare (CoNaMR), National Rare Disease Committee instituted by the Italian Ministry of Health; ii) the founder of the “Rare Special Powers” (RSP) not-for-profit association focused on raising awareness of rare diseases and/or neurodevelopmental disorders; iii) a former member of the “Osservatorio sulla condizione delle persone con disabilità della Regione Umbria”.Moreover, Dr Passeri is a member of the CUPID (Cancer Understanding Prevention in Intellectual Disabilities) COST Action and was a former deputy leader for public awareness at COST Action MINDDS (Maximizing Impact of research in NeuroDevelopmental Disorders).

She earned a Patient Advocacy Management Master from the Università Cattolica del Sacro Cuore in Rome; full fellowship award. Also, she did a training course on bioethics organized by the Università Cattolica del Sacro Cuore.During this time, Dr Passeri participated in numerous events, congresses, conventions, meetings to share her knowledge and skills as well as to learn additional competences. 

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).

She is currently preparing the Bachelor thesis on the impact that COVID-19 had on Albanian healthcare system expenditures (Bachelor thesis focused on health economics) 

March 2024-current: TEDDY Young Advisory Group member representing KiDS Albania and TEDDY Board Representative  

September 2017-current: Member of the Albanian chapter of TEDDY KiDS since 2017 

Actively participated in several summits and meetings, including: 

• 2019 – ERASMUS+ exchange Bari, Italy (organized by CVBF) 

• July 2022 Lyon, France (iCAN summit) 

• July 2024 Bari, Italy (iCAN summit) 

• March 2025 Bologna, Italy (EPTRI Scientific Meeting)

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