Conference programme

Nick Finer, MBBS, FRCP

President of the International Prader-Willi Syndrome Organisation (IPWSO); Honorary Clinical Professor at University College London (UCL), United Kingdom; consultant endocrinologist and international expert in obesity, diabetes and Prader-Willi syndrome

Nick Finer is one of the most respected international specialists in endocrinology, obesity medicine, diabetes and Prader-Willi syndrome. Recognised for his contributions to the development of clinical practice and research in these fields, over a career spanning more than four decades he has held prestigious academic and clinical positions at University College London and University College London Hospitals NHS Foundation Trust.

His scientific work has focused on complex obesity, diabetes mellitus, metabolism, cardiovascular risk, clinical nutrition and the development of evidence-based therapeutic approaches. Through his research, publications and the clinical programmes he has led, he has contributed significantly to improving the medical management of people with obesity and Prader-Willi syndrome.

As President of IPWSO, Nick Finer promotes international cooperation among clinicians, researchers, patient organisations and families, championing equitable access to medical expertise, the education of professionals and the development of research that can improve the quality of life of people with Prader-Willi syndrome around the world.

Prof. dr. Kristian Emil Kristoffersen

Director, Stiftelsen Frambu – Frambu Competence Centre for Rare Disorders, Norway; Professor II in Nordic linguistics, Nord University

Prof. Dr Kristian Emil Kristoffersen leads Stiftelsen Frambu, the organisation that runs one of Norway's main competence centres for rare diagnoses. His academic and scientific work addresses language development, language disorders, clinical linguistics and the communication characteristics of people with rare diagnoses, including Cri-du-chat syndrome.

Zozan Sewger Kvist

Chief Executive Officer – VD, Ågrenska AB (svb), Sweden

Zozan Sewger Kvist leads Ågrenska, the Swedish national competence centre for rare conditions and other disabilities. Her work focuses on developing services that complement medical and social interventions, with an emphasis on the everyday consequences of rare diseases and on the lifelong support offered to the person and their family.

Dr. Susanne Blichfeldt

Paediatrician; Consultant in neuropaediatrics; member of the IPWSO Clinical and Scientific Advisory Board and the IPWSO Famcare Board, Denmark

Dr Susanne Blichfeldt is a paediatrician with extensive experience in the diagnosis, treatment and management of Prader-Willi syndrome. She has contributed to research on growth hormone treatment, to the education of families and professionals, and to the development of international care recommendations.

Dorica Dan

President of the Prader Willi Association of Romania; President of the National Alliance for Rare Diseases Romania – ANBRaRo; Director General of the NoRo Centre

Dorica Dan is the founder and strategic coordinator of the NoRo Centre and one of the representative voices of the rare disease community in Romania. Her work is dedicated to developing integrated services for people affected by rare diseases and their families, strengthening patient organisations and promoting equitable access to diagnosis, treatment, education and social support. She is constantly involved in national and European advocacy and cooperation initiatives in the rare disease field.

Prof. univ. dr. Maria Puiu

Consultant in medical genetics; Deputy Director General and Coordinator of the Genomic Medicine Centre, Research and Development Institute in Genomics

Prof. Univ. Dr Maria Puiu is a medical geneticist, academic and specialist with extensive work in clinical genetics, rare diseases and genomic medicine. At the Research and Development Institute in Genomics she contributes to developing the infrastructure and programmes needed to integrate genomic testing into medical practice and to improve patients' access to genetic diagnosis. Her work brings together medical practice, university teaching, research and professional representation.

Prof. univ. dr. Cătălina Poiană

Consultant in endocrinology; University Professor and Head of the Endocrinology Discipline, 'Carol Davila' University of Medicine and Pharmacy, Bucharest; Head of Endocrinology Section I, 'C.I. Parhon' National Institute of Endocrinology; President of the College of Physicians of Romania

Prof. Univ. Dr Cătălina Poiană has a clinical, academic and managerial track record of reference in Romanian endocrinology. Her expertise includes complex endocrine pathology, metabolic diseases and the interdisciplinary management of patients with chronic conditions. As President of the College of Physicians of Romania, she is involved in representing the medical profession, developing professional standards and promoting the quality of medical care.

Prof. univ. dr. Emilia Maria Severin

University Professor; Head of the Genetics Discipline – Dental Medicine, Faculty of Dentistry, 'Carol Davila' University of Medicine and Pharmacy, Bucharest; doctoral supervisor

Prof. Univ. Dr Emilia Maria Severin has carried out long-standing academic and research work in medical genetics, cytogenetics and the genetic implications of congenital anomalies and rare conditions. She has contributed to training several generations of doctors and to developing genetic education in dental medicine. Her work promotes the integration of genetic assessment into the diagnosis and multidisciplinary management of patients.

Prof. univ. dr. Dana Cristina Craiu

Consultant in paediatric neurology; University Professor, Paediatric Neurology Discipline, 'Carol Davila' University of Medicine and Pharmacy, Bucharest; Expertise Centre for Rare Paediatric Neurological Diseases, 'Prof. Dr. Alexandru Obregia' Clinical Psychiatry Hospital

Prof. Univ. Dr Dana Cristina Craiu specialises in paediatric neurology, epileptology, rare neurological diseases and neurogenetics. Her work integrates clinical assessment, research, medical education and the multidisciplinary coordination of children with complex neurological conditions. She is involved in networks and initiatives dedicated to rare neurological diseases, rare epilepsies and patients' access to genomic diagnosis.

Dr. Laura Otilia Damian

Consultant in rheumatology; Doctor of Medical Sciences; Rheumatology Clinic, Cluj-Napoca County Emergency Clinical Hospital; Healthcare Provider Sub-Representative, ERN ReCONNET

Dr Laura Otilia Damian is a rheumatologist with expertise in systemic autoimmune diseases, rare connective tissue diseases and autoinflammatory conditions. Her work includes the assessment and management of patients with systemic lupus erythematosus, antiphospholipid syndrome, inflammatory myopathies, vasculitis and other rare rheumatological conditions. Through her involvement in ERN ReCONNET, she contributes to European cooperation, the exchange of expertise and improving the care pathway for patients with rare and complex diseases.

Dr. Andreea Pop

Specialist in paediatric psychiatry, NoRo Centre

Dr Andreea Pop works within the multidisciplinary medical team of the NoRo Centre. Her work focuses on assessing the mental health of children and adolescents, neurodevelopmental disorders, emotional and behavioural difficulties, and on connecting medical intervention with psychological, therapeutic, educational and family-support services.

Dr. Sorina Dîngă Petrușan

Consultant in physical and rehabilitation medicine, NoRo Centre

Dr Sorina Dîngă Petrușan is a consultant in physical and rehabilitation medicine, with experience in the comprehensive assessment and coordination of individualised rehabilitation programmes for patients with neurological, musculoskeletal, rheumatological and other conditions that cause functional limitations. As Medical Director of the Borșa Rehabilitation Hospital, she was involved both in clinical work and in organising and coordinating rehabilitation medical services. She currently works at the NoRo Centre, where she contributes to the functional assessment of patients and to developing integrated, personalised rehabilitation programmes, in collaboration with the multidisciplinary team. Her work promotes continuity of care and the role of the physical and rehabilitation medicine physician in establishing the functional diagnosis and coordinating therapeutic interventions.

Prof. CFM dr. Elena Căciulan

Physiotherapist and kinesiotherapist; CFM Professor; Doctor of Medical Sciences; Founder of Elena Căciulan Fizioclinique; first President of the College of Physiotherapists of Romania

Prof. CFM Dr Elena Căciulan is one of the specialists who contributed to the development and recognition of the physiotherapy profession in Romania. She has over 37 years of professional experience in the functional rehabilitation of newborns, children, adolescents and adults. Her work includes paediatric physiotherapy, oro-facial education, manual therapy and the development of rehabilitation programmes adapted to the functional particularities of each patient.

Prof. univ. dr. Adrian Marian Roșan

University Professor, Department of STEM Subject Didactics and Special Psychopedagogy, Faculty of Psychology and Educational Sciences, Babeș-Bolyai University, Cluj-Napoca

Prof. Univ. Dr Adrian Marian Roșan is a specialist in special psychopedagogy, the assessment of people with disabilities, neurodevelopmental disorders and evidence-based psychopedagogical interventions. His university and research work addresses comprehensive assessment, inclusive education, the development of intervention tools and the integration of psychological and educational perspectives in supporting people with complex needs.

Lector univ. dr. Dan Octavian Rusu

University Lecturer, Department of Applied Psychology, Babeș-Bolyai University, Cluj-Napoca; Principal Psychologist; President of the Cluj Branch of the College of Psychologists of Romania

Lect. Univ. Dr Dan Octavian Rusu is a psychologist, academic and trainer, with experience in applied psychology, clinical psychology and the development of psychological services. His work aims to promote scientifically grounded professional practices, develop psychologists' competences and strengthen collaboration among professionals in psychology, health, education and social assistance.

Conf. univ. dr. Anamaria-Carolina Bodea-Hațegan

Associate Professor, Department of STEM Subject Didactics and Special Psychopedagogy, Babeș-Bolyai University, Cluj-Napoca; Coordinator of the 'Language Therapy and Educational Audiology' master's programme

Conf. Univ. Dr Anamaria-Carolina Bodea-Hațegan is a specialist in speech and language therapy, the treatment of language and communication disorders, special psychopedagogy and educational audiology. Her academic and research work focuses on the assessment and intervention of language, communication and hearing disorders, as well as on developing interdisciplinary support models.

Alexandra-Loredana Dan

Director of Community Services, NoRo Centre; special psychopedagogue and speech therapist

Alexandra-Loredana Dan coordinates the community services developed at the NoRo Centre and is involved in organising integrated interventions for children, young people and adults affected by rare diseases or disabilities. She has experience in special psychopedagogy, speech therapy, group facilitation and case management. Her work aims to align therapeutic, educational and social services with the needs of the person and their family.

Paula Neagu

Psychologist; President of the Sălaj Territorial Branch of the College of Psychologists of Romania; co-founder of MindRestart

Paula Neagu is a psychologist and representative of the professional community of psychologists in Sălaj County. As President of the Sălaj Territorial Branch of the College of Psychologists of Romania, she is involved in strengthening professional dialogue, supporting the continuing development of psychologists and promoting high standards of practice. Through the MindRestart initiative, she contributes to creating contexts for collaboration between psychology and medicine and to promoting an interdisciplinary approach in which the person is assessed and supported beyond the limits of a single profession or specialty.

Conf. univ. dr. Ioana Streață

Specialist in medical genetics; Associate Professor, Cellular and Molecular Biology Discipline, Faculty of Medicine, University of Medicine and Pharmacy of Craiova; Dolj Regional Centre for Medical Genetics, Craiova County Emergency Clinical Hospital

Conf. Univ. Dr Ioana Streață is a medical geneticist and academic, with clinical and research work in rare genetic diseases, genomics and neurodevelopmental disorders. Her areas of interest include the genomics and epigenetics of rare diseases, identifying genotype-phenotype correlations and using functional genomics to improve diagnosis and the understanding of disease mechanisms. Through her work at the University of Medicine and Pharmacy of Craiova and the Dolj Regional Centre for Medical Genetics, she contributes to integrating clinical assessment, genetic testing and research into the care pathway of people with rare and complex conditions.

Conf. univ. dr. Michael Schenker

Consultant medical oncologist; associate professor, University of Medicine and Pharmacy of Craiova; „Sf. Nectarie” Oncology Centre, Craiova

Michael Schenker, MD, PhD, is a consultant medical oncologist and university lecturer with extensive experience in the assessment, treatment and monitoring of oncology patients.

His clinical work brings together specialist consultation, systemic cancer therapies, post-treatment monitoring, management of adverse reactions and supportive care. His contribution to the conference offers the perspective of oncology as a model of integrated care, in which diagnosis and treatment must be coordinated with psychological support, rehabilitation, nutrition, long-term monitoring and support for the family.

Psiholog dr. Ramona-Adriana Schenker

Clinical psychologist; cognitive-behavioural psychotherapist; psycho-oncologist; PhD in medical sciences; „Sf. Nectarie” Oncology Centre, Craiova

Ramona-Adriana Schenker, PhD, is a clinical psychologist, cognitive-behavioural psychotherapist and psycho-oncologist, with experience in assessing and supporting oncology patients and their families.

Her work covers clinical assessment, psychological counselling and interventions tailored to the stage of the illness, the treatment and the family context. Her doctoral research was dedicated to identifying and assessing psychological disorders in patients diagnosed with breast cancer. Through her clinical and scientific work, she promotes the integration of psychological support throughout the entire cancer journey — from communicating the diagnosis and adapting to treatment, to managing anxiety and depression and maintaining quality of life.

Prof. univ. dr. Mihai Craiu

Consultant paediatrician; professor and Head of the Paediatrics II Discipline, Department 7 Paediatrics, „Carol Davila” University of Medicine and Pharmacy, Bucharest; „Alessandrescu-Rusescu” National Institute for Mother and Child Health

Prof. Mihai Craiu, MD, PhD, is a consultant paediatrician and university professor whose clinical and academic work is dedicated to children’s health, medical education and improving communication between professionals, children and parents.

His experience combines medical practice, the training of students and physicians, and the promotion of informed, responsible decisions in paediatric care. At the conference, his contribution highlights the paediatrician’s role in the early recognition of complex cases, coordinating investigations and connecting the child and family with the medical specialties, therapeutic services and community resources they need.

Prof. dr. Tudor Lucian Pop

Consultant paediatrician and paediatric gastroenterologist; professor and Head of the Paediatrics II Discipline, „Iuliu Hațieganu” University of Medicine and Pharmacy, Cluj-Napoca; President of the Romanian Society of Social Paediatrics; member of the Board of the European Paediatric Association – EPA-UNEPSA

Prof. Tudor Lucian Pop, MD, PhD, is a consultant paediatrician and paediatric gastroenterologist, with clinical, teaching and scientific activity in general paediatrics, paediatric gastroenterology and hepatology, rare liver diseases and liver transplantation.

As President of the Romanian Society of Social Paediatrics, he promotes an approach to child health that connects medical care with prevention, the family, the social environment and continuity of services. His participation brings an important perspective on the paediatrician’s role in recognising complex cases and coordinating the child’s pathway across family, medical specialties, rehabilitation, education and community services.

Lidia Manuela Onofrei

Ministry of Health; involved in coordinating activities dedicated to integrated community services

Lidia Manuela Onofrei works within the Ministry of Health and has experience in developing and coordinating integrated community services, community health care and programmes addressed to vulnerable people and communities.

She has been involved in national projects dedicated to creating and implementing integrated community services, built around cooperation between health, social assistance, education and local authorities. Her work has focused on developing community teams, training professionals and increasing vulnerable people’s access to coordinated medical, social and educational services.

Her participation in NoRo Integrated Care 2026 brings the perspective of central administration on how community services are organised and how medical, social and educational interventions can be connected at local level around the person and the family.

Dr. Andra Ciucă

Clinical psychologist and registered genetic counsellor with the European Board of Medical Genetics; Chair of the Genetic Nurse & Genetic Counsellor Branch Board, European Board of Medical Genetics

Dr Andra Ciucă is a postdoctoral researcher at Babeș-Bolyai University in Cluj-Napoca, specialising in genetic counselling and clinical psychology. Her research spans several scientific directions on the psychosocial aspects of rare diseases: (1) psychosocial interventions in rare diseases such as Huntington’s disease, integrating the patient perspective into research; (2) investigating the effectiveness of genetic counselling in rare hereditary cancers through a randomised clinical trial and by synthesising the evidence in meta-analyses and systematic reviews; (3) analysing methods for measuring the perspective and experience of patients with rare diseases who take part in advanced studies, such as gene therapies. She also contributes to developing the genetic counselling profession, currently leading the genetic counselling branch of the European Board of Medical Genetics.

Diana Cristea

President of the National College of Social Workers of Romania (CNASR)

Diana Cristea is a senior social worker and a prominent figure in Romanian social work, recognised for her consistent contribution to developing and strengthening the profession. Since 2022 she has served as President of the National College of Social Workers of Romania (CNASR), having previously been the organisation’s Executive Secretary between 2017 and 2022.

A graduate of the Faculty of History and Philosophy at Babeș-Bolyai University, majoring in Social Work (class of 1995), she has built her career on a genuine commitment to the values and standards of the profession. She has actively promoted the role of the social worker in society, contributing to numerous initiatives and events, notably the organisation of the National Gala of Excellence in Social Work.

She has made a significant contribution to the professional and regulatory framework of social work in Romania, taking part in drafting the Code of Practice for social workers and several reference professional guidelines. With extensive experience in project management, she has contributed to developing and delivering specialised social services for children and families.

Lector univ. dr. Ioana-Letiția Șerban

University lecturer, Special Psychopedagogy, Faculty of Psychology and Educational Sciences, Babeș-Bolyai University, Cluj-Napoca

With over 20 years of dedicated experience in special psychopedagogy, her work focuses on the education and specialised therapy of children with hearing disabilities and on guiding and counselling their parents and families.

She runs psychopedagogical assessment and intervention programmes for pupils with hearing disabilities and language and communication disorders across all educational and therapeutic approaches: auditory-verbal, oralist, total communication and sign language. Her practical and research work has resulted in publications on total communication (including her doctoral thesis), the auditory-verbal approach, the teaching of sign language and the professional training of specialists.

The title of her conference talk: „The child with a hearing disability at the centre of an integrated team: family, school, specialists and community”.

Ramona Maria Mocuțiu

Senior social worker and social work supervisor; Prader-Willi Association of Romania — coordinator of the day centre for adults with disabilities

Ramona Maria Mocuțiu is a senior social worker and social work supervisor with over 12 years of experience in social services for people with rare diseases and disabilities. She works within the Prader-Willi Association of Romania, where she is part of the management team and coordinates the day centre for adults with disabilities. Her work includes assessing social needs, case management, developing, coordinating and licensing social services, and facilitating beneficiaries’ access to integrated services and community resources.

Throughout her career she has contributed to developing and implementing national and international projects, to producing methodologies and professional training programmes, and to improving social services. She promotes interdisciplinary collaboration and the integrated care model, considering that coordinated intervention between medical, social, educational and community services is essential for improving the quality of life of people with rare diseases and disabilities and their families.

Conf. univ. dr. Andrea Hathazi

Associate professor, Special Psychopedagogy, Faculty of Psychology and Educational Sciences, Babeș-Bolyai University, Cluj-Napoca; Vice-President of ICEVI Europe

Andrea Hathazi is an associate professor (PhD) in Special Psychopedagogy at the Faculty of Psychology and Educational Sciences, Babeș-Bolyai University in Cluj-Napoca. Her main areas of interest are inclusive education, the education of people with multiple disabilities and the education of people with deafblindness.

On behalf of Babeș-Bolyai University she coordinates numerous Erasmus+ strategic partnership projects on inclusive education, support for vulnerable groups, multiple disabilities and early intervention (BURNOUT FREE ECI, AURORA, ErISFaVIA, PrECIVIM), as well as European CERV projects (RISE). She is a national trainer in the field of deafblindness and has contributed to developing the National Curriculum for Multiple Sensory Disabilities/Deafblindness.

She is Vice-President of ICEVI Europe (the International Council for the Education and Rehabilitation of People with Visual Impairment), representing the Balkan region, coordinates the ICEVI Europe newsletter, and is a frequent invited speaker at international and national conferences.