Congress Speakers

  • Professor Ari Zimran, Israel I Congress Chair

    Professor Ari Zimran, Israel I Congress Chair

    Professor Ari Zimran is Director of the Gaucher Clinic at Shaare Zedek Medical Center in Jerusalem, Israel. This is the world’s largest referral centre for Gaucher disease, where more than 750 patients are followed and about 350 patients are treated with enzyme replacement therapy. 
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  • Asa Abeliovitch, USA

    Asa Abeliovitch, USA

    CEO, Founder of Prevail Therapeutics
    Co-founder of Alector Pharmaceuticals
    Previously Tenured Associate Professor of Pathology, Cell Biology and Neurology at Columbia; 

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  • Oral Alpan, USA

    Oral Alpan, USA

    Dr. Oral Alpan, An Allergist and Clinical Immunologist and the Director of Immunopathogenesis section at O & O Alpan, LLC. 
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  • Holger Cario, Germany

    Holger Cario, Germany

    Activities: Clinical research on epidemiology and treatment of patients with thalassemia major. Co-ordinator of the previous German Multicenter -Thalassemia Study (1996-1999)
    Research on congenital erythrocytosis and MPN in childhood. Collaborative survey on “Polycythemia vera and congenital erythrocytosis in children and adolescents – PV-ERY-KA-03”
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  • Anthony K C Chan, Canada

    Anthony K C Chan, Canada

    Dr. Chan is a pediatric hematologist/oncologist at Hamilton Health Sciences. He is a Professor of Pediatrics, Chief of the Division of Hematology-Oncology (Pediatrics), and the Associate Chair of Research (Pediatrics) at McMaster University.  He is the Director of the Pediatric Thrombosis Clinic and Hemophilia Clinic at McMaster Children’s Hospital. 
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  • Tanya Collin-Histed, UK

    Tanya Collin-Histed, UK

    Tanya became involved in the Gaucher world in 1996 when her daughter Maddie was diagnosed with Type 3 Gaucher disease. A year later she became a volunteer for the Gauchers Association and started to support patients and their families with Type II and III Gaucher Disease through family conferences, information booklets and proving friendship and emotional support.
    In 2001 Tanya received the Alan Gordon Memorial Award in recognition for her work with Neuronopathic Gaucher disease and her support to families.
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  • Elin Haf Davies, UK

    Elin Haf Davies, UK

    Elin initially qualified as a Children’s nurse at Great Ormond St Children’s Hospital, going on to gain a BSc (Neuroscience) and MSc (Research Methods). After years of recruiting children to clinical trials Elin embarked on a PhD at the Institute of Child Health (UCL) to develop a clinical outcome measure and biomarker of ataxia in children with neuro-metabolic disease. 
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  • Tarek Ebrahim, USA

    Tarek Ebrahim, USA

    With 17 years of experience in rare and ultra-rare diseases, Dr. Tarek Ebrahim is Head of Medical Affairs for the Rare Disease Division at X4 Pharmaceuticals in Cambridge, Mass.  
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  • Francesco Emma, Italy

    Francesco Emma, Italy

    Dr Emma received is Medical Degree and specialized in Pediatrics from the Catholic University of Louvain, Brussels, Belgium.  He then completed his training in Pediatric Nephrology at Boston Children's Hospital, Harvard Medical School.  In 1998, Dr Emma moved to the Bambino Gesù Children's Hospital - IRCCS, in Rome, where he has set-up the Nephrology Research Laboratory and was appointed Chief of the Division of Pediatric Nephrology in 2005.  
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  • Shari Fallet, USA

    Shari Fallet, USA

    Shari Fallet is a clinical geneticist who currently serves as Director, Clinical Development at AVROBIO, a biotechnology company developing gene therapies for rare diseases. Previously, Shari worked as Director, Clinician in Global Medicines Development for rare diseases at Pfizer and as Global Medical Affairs Director for rare diseases at Genzyme. 
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  • Yaacov Frishberg, Israel

    Yaacov Frishberg, Israel

    Yaacov Frishberg is currently the Director of the Division of Pediatric Nephrology at the Shaare Zedek Medical Center in Jerusalem, Israel and an Associate Professor of Pediatrics at the Hebrew University School of Medicine.
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  • Ozlem Goker-Alpan, USA

    Ozlem Goker-Alpan, USA

    Dr. Ozlem Goker-Alpan is the founder and CEO of LDRTC. Dr. Goker-Alpan founded LDRTC in 2013 with a vision to provide high quality care for individuals with lysosomal storage disorders and other rare diseases by utilizing a variety of clinical treatment protocols, multi-specialty clinics and research protocols.
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  • Mia Horowitz, Israel

    Mia Horowitz, Israel

    Mia Horowitz graduated from the department of Genetics, The Weizmann Institute of Science, Rehovot Israel, in 1980. Following a two and half years as a post-doctoral fellow under the supervision of Prof. P. A. Sharp at MIT, Massachusetts, USA, she joined the Weizmann institute as an investigator.
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  • Derralynn Hughes, UK

    Derralynn Hughes, UK

    Dr Hughes trained in medicine at Oxford University during which she intercalated a doctorate in macrophage physiology . After training in Haematology in London she was appointed to lecturer in haematology with a special interest in lysosomal storage disorders at the Royal Free Hospital through UCL and subsequently to Senior Lecturer and consultant in 2008. 
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  • Atul Mehta, UK

    Atul Mehta, UK

    Professor Mehta is a Consultant Haematologist and Physician at the Royal Free Hospital in London, part of the Department of Haematology of University College London School of Medicine.   He completed his undergraduate training at Cambridge University and King’s College Hospital.  He then trained in General Internal Medicine at King’s College Hospital and Hammersmith Hospital in London and in Haematology at the Hammersmith Hospital.  
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  • Uma Ramaswami, UK

    Uma Ramaswami, UK

    Uma Ramaswami is a Consultant in Inherited Metabolic Disorders based at the Lysosomal Disorders Unit (LSDU) at the Royal Free Hospital, London.
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  • Shoshana Revel-Vilk, Israel

    Shoshana Revel-Vilk, Israel

    Affiliation: Gaucher Unit, Shaare Zedek Medical Center, affiliated with Hebrew University Medical School, Jerusalem, Israel
    Working/Research Focus: Shoshana has completed her fellowship in Pediatric Hematology/Oncology and Pediatric Thrombosis and Hemostasis at The Hospital for Sick Children, Toronto, Canada in 2002. 
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  • Arndt Rolfs, Germany

    Arndt Rolfs, Germany

    Arndt Rolfs, MD, Professor for Neurology and Psychiatry, is appointed CEO and founder of Centogene AG, and Director of the Albrecht-Kossel-Institute for Neuroregeneration at the University of Rostock, Germany. He received his approbation for human medicine in 1985 from the University of Mainz, Germany and the University of Vienna, Austria. Arndt is a principle investigator of several international multicentre studies in the area of rare diseases and actively engaged in biomarker research for several metabolic diseases. 
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  • Suthesh Sivapalaratnam, UK

    Suthesh Sivapalaratnam, UK

    Dr. Suthesh Sivapalaratnam studied Medicine at the University of Amsterdam.  Hereafter he ventured into a combined PhD fellowship between the University of Cambridge (supervisor: Prof. W. H. Ouwehand) and the University of Amsterdam (Supervisor: Prof. M. Levi). In 2012 he successfully defended his thesis “The Molecular Basis of Early onset Cardiovascular Disease”. He subsequently did core medical training at the Academic Medical Center in Amsterdam. 
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  • Jeff Szer, Australia

    Jeff Szer, Australia

    Jeff Szer was the foundation Professor/Director of the Department of Clinical Haematology at Royal Melbourne Hospital. 
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  • Robert Will, UK

    Robert Will, UK

    Professor Robert Will trained in medicine at Cambridge University and is Professor of Clinical Neurology at the University of Edinburgh, UK. He has a long-term interest in Creutzfeldt-Jakob disease, having carried out a research project on the epidemiology of CJD at Oxford University from 1979-1982 and having founded the National CJD Surveillance Unit, UK in 1990 and acted as its Director for 10 years.
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  • Bryan Winchester, UK

    Bryan Winchester, UK

    Bryan Winchester is an Emeritus Professor of Biochemistry at the UCL Great Ormond Street Institute of Child Health, University College London. He has taught Biochemistry and carried out research on various aspects of lysosomal storage diseases at London University for over 40 years. In particular he worked closely with the Enzyme Diagnostic Laboratory at Great Ormond Street Hospital from 1988-2006. 
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  • Zeev Zelig, Israel

    Zeev Zelig, Israel

    Zeev is CEO of his consultancy firm servicing Multinational and Local companies in the life science field - Zeev Zelig Life Sciences Strategic Consulting LTD
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