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Biographies

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Eva Bergsträsser

Eva Bergsträsser (PD Dr. med.) heads the Competence Center for Paediatric Palliative Care at the University Children's Hospital Zurich. In addition, she is co-head of the consultation for children and adolescents with chronic pain and was for a long time in paediatric oncology and hematology. In addition to clinical activities, she teaches, researches, publishes and is involved in the further development of palliative care for children and their families in Switzerland.

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Viktor Kožich

Viktor Kožich, M.D., Ph.D. is a Professor of Medical Genetics at the Department of Pediatrics and Inherited Metabolic Disorders, General University Hospital in Prague and Charles University-First Faculty of Medicine, Prague, Czech Republic.

Viktor Kožich graduated from the School of General Medicine, Charles University in Prague in 1985. Since his graduation he has been working in the Institute of Inherited Metabolic Diseases and he specialized in clinical biochemistry and medical genetics, in 2012 he became the Full Professor of Medical Genetics at Charles University. His main interests are genetic, biochemical, clinical, epidemiological and ethical aspects of inherited metabolic disorders, namely disorders affecting metabolism of B-vitamins and sulfur amino acids.

Professor Kožich has been a tutor of graduate and postgraduate students, he is an author of over 140 publications in international peer reviewed journals, several chapters in books, and of articles and chapters in Czech medical literature. He has been a member of councils of several international learned societies (SSIEM, ERNDIM, and ESHG) and he is a member of the Executive Board of E-HOD since 2013. Prof.Kožich is also interested in newborn screening for inherited metabolic disorders and since 2009 he is a Chairman of the Czech national Coordination Center on Neonatal Screening.

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Nina Lenherr-Taube

Professional Experience
Paediatric Endocrinology and Diabetes
01/2021 – current: Endocrine Staff Physician, University Children’s Hospital Zürich, Prof. D. Konrad
07/2018-12/2020: Clinical Research Fellowship, Hospital for Sick Children, Toronto, Dr. J. Hamilton
07/2017-06/2018: Fellowship, University Children’s Hospital Basel (UKBB), Prof. U. Zumsteg
01/2015-12/2015: Residency, University Children’s Hospital Basel (UKBB), Prof. U. Zumsteg

Paediatric Clinical Research Fellowship
04/2014-03/2015: University Children’s Hospital Basel (UKBB), Prof. P. Latzin and PD Dr. G. Szinnai

General Paediatrics
04/2016-04/2017: Residency in Paediatrics at Children’s Hospital Lucerne, Prof. T. Neuhaus
01/2012-03/2016: Residency at University Children’s Hospital Basel (UKBB), Prof. U. Frey

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Miriam Kristin Hufgard- Leitner

Professional Experience
since Dec. 2020          Internal Medicine III, Department for Endocrinology and Metabolism, outpatient clinic for endocrinology and metabolism

Oct. 2019-                     junior head of outpatient clinic for IMD in adults at the Department for Endocrinology and Metabolism

2017-2019                    apprenticeship at the outpatient clinic for IMD in adults at the Department for Endocrinology and Metabolism

2013/2014                    Internal Medicine III, Department for Endocrinology and Metabolism

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Judit Simon

Judit Simon is Professor and Head of the Department of Health Economics (DHE) and Deputy Head of the Center for Public Health at the Medical University of Vienna (MUV) in Austria. She also coordinates the Doctoral Programme Public Health and leads the Health Economics Programme Line at the Ludwig Boltzmann Institute Applied Diagnostics. Previously she held positions at the LSE, UCL and University of Oxford where she remains Visiting Professor of Cognitive Health Economics at the Department of Psychiatry and Research Associate at the Health Economics Research Centre. 

She has a multidisciplinary background in medicine, health economics and public health with relevant academic degrees from Hungary (MD (Hons), BA, BSc Szeged) and the UK (MSc York, DPhil Oxford). She is Fellow of the UK Faculty of Public Health through Distinction, founding board member of the ISPOR Austria Chapter, and sits on several national and international advisory boards including Statistics Austria, the Austrian Public Health Institute and the COVID-19 Task Force of ASPHER. 

Her main expertise includes methodological and applied health economic evaluation research, (capability) outcome studies, cost/cost-of-illness analyses, health services and systems research, clinical guideline development, and evidence synthesis. She has been principal/co-investigator on numerous projects funded by the ECNP, EU H2020, FWF, LBG, MRC, NIHR and the WHO (total grants: 20 with over Euro 35 million funding) in the fields of mental health, public health (incl. nutrition, chronic diseases, migrant health), personalized cancer care and end-of-life care. She is coordinator of the recently finished EU H2020 PECUNIA project to develop improved methods for health economic evaluations, is principal investigator on several studies related to capability well-being in mental health (OxCAP-MH) and co-morbidity research, and leads the health economics WP of the H2020 iLIVE end-of-life care project and several clinical trials.

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Tara Morrison

Tara Morrison is director and chair of HCU Network Australia. Her connection to this disorder is a personal one: her two sons were diagnosed with Classical Homocystinuria at ages 5 and 1 years. At the time of diagnosis the Morrison Family were left with many unanswered questions. Their response has been to try and change this experience for others.

In 2014 Tara founded HCU Network Australia and serves voluntarily as Director and Chair of the Board. She is eager to utilize her personal and professional experience to achieve real outcomes for individuals affected by the disorder and their families.

Tara has practiced law in private practice for the past 15 years. She has worked in a range of areas with a special interest in family law and building and construction. Tara holds a double degree in Arts and Law. She is a solicitor admitted in the state of New South Wales and the High Court of Australia. 

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Daniela Moor
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Tina Bosshard
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Isabel Fischer

Daniela Moor, Tina Bosshard and Isabel Fischer are the dietitians of the metabolic department at the Children's Hospital in Zurich. Daniela has been working in the metabolic department for about 20 years and brings great experience with her. In addition to metabolism, she also works with children who need a ketogenic diet. Tina has been working at the Children's Hospital for 9 years and has been working in metabolism since day one. Further working areas of her are cystic fibrosis and eating disorders. Isabel started working at Kispi 7 years ago and has been working with children and adolescents with metabolic disorders for about 5 years. Other areas of her expertise include the ketogenic diet and allergology. 

Together the 3 dietitians are responsible for about 200 patients of the metabolics department from the nutrition side and are all members of the SGIEM-dietitian group. 

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Florin Bösch

PUBLICATIONS:

Bösch, F., Landolt, M. A., Baumgartner, M. R., Zeltner, N., Kölker, S., Gleich, F., ... & Huemer, M. (2021). Healthrelated quality of life in paediatric patients with intoxicationtype inborn errors of metabolism: Analysis of an international data set. Journal of Inherited Metabolic Disease, 44(1), 215-225.  https://onlinelibrary.wiley.com/doi/full/10.1002/jimd.12301

Morrison, T., Bösch, F., Landolt, M. A., Kožich, V., Huemer, M., & Morris, A. A. M. (2021). Homocystinuria patient and caregiver survey: experiences of diagnosis and patient satisfaction. Orphanet journal of rare diseases, 16(1), 1-12.
https://ojrd.biomedcentral.com/articles/10.1186/s13023-021-01764-x

Bösch, F., Zeltner, N. A., Baumgartner, M. R., Huemer, M., & Landolt, M. A. (2022). Key patient-reported outcomes in children and adolescents with intoxication-type inborn errors of metabolism: an international Delphi-based consensus.
https://ojrd.biomedcentral.com/articles/10.1186/s13023-022-02183-2

 

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Christel Tran

Christel Tran is associate physician at the Division of Genetic Medicine, Lausanne University Hospital. She graduated from Lausanne University, Switzerland. She completed her training in internal medicine in Lausanne and then as an Endocrinologist-Diabetologist in Geneva. In 2007, she joined the research group of Prof. L. Tappy at the Department of Physiology (UNIL, Lausanne) to become familiar with the basics of clinical research in metabolism. In 2011, she moved to Toronto, Canada (SickKids Hospital) to specialize in the field of Inborn Errors of Metabolism (IEM). In 2013, she joined the Center for Molecular Diseases and implemented, with the help of the metabolic pediatricians, the Adult IEM Clinic at the University Hospitals of Lausanne and Geneva. She is a member of the steering committee of the SGIEM since 2016, and representative of the Adult Metabolic subgroup.

In 2018 and 2021, she was conferred the academic title of Master of Education and Research (MER) and Privat Docent (PD), respectively for her various teaching, clinical development and research activities in the field of adult IEM.

 

 

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Ingeborg Krägeloh-Mann

2016

Research prize of the Society of Neuropediatrics (GNP)

2012 - 2019

Election DFG Fachkolleg  - review board of the German Resaerch Foundation

2007 – 2019

Since 2019

Member of the CIN (Center for Integrative Neuroscience)

Ombudsperson of the Medical Faculty , University of Tübingen