INTERNATIONAL SPEAKERS
Alphabetically ordered
Mrs. Alexa Burgess
Veterinary Specialist, Rare Disease Advocate and Mother of a Child with a Rare Disease, Perth, Australia
Ms. Alexandra Heumber Perry
Chief Executive Officer, Rare Diseases International, Geneva, Switzerland
Mrs. Amanda Moore
CEO, Angelman Syndrome Foundation, Aurora, Illinois, USA
Mrs. Amelia Beatty
Board of Directors, Foundation for Angelman Syndrome Therapeutics (FAST), Austin, Texas, USA
Dr. Anwar Baban
MD PhD
Consultant Clinical Genetics and Genomics, Rare Diseases and Medical Genetics Units, Bambino Gesu Children's Hospital & Research Institute, Rome, Italy
Ms. Aster Lynn Sur
Supervising Nurse and Project Development Officer IV, Institute of Human Genetics, National Institutes of Health, University of the Philippines Manila, Manila, Philippines
Dr. Bahaa Jalal
Director, Center for the Disabled, Assiut University, Assiut, Egypt
Director, Help Center for the Middle East and North Africa, Kuwait, Kuwait
Dr. Bremadesam Raman Lakshmi
Founder Trustee & Managing Director, Molecular Diagnostics, Counseling, Care and Research Centre (MDCRC), Neelambur, Coimbatore, India
Founder Member & Vice President, Board of Genetic Counseling (BGCI-India)
Board Member, Asia Pacific Society for Human Genetics (APSHG)
Dr. Chiara Cimmaruta
PhD
Postdoctoral Fellow, Molecular Mechanisms of Pathological and Physiological Ageing, Institut Pasteur, Paris, France
Dr. Cristina Skrypnyk
MD, PhD
Consultant Medical Geneticist, Genetics & Inherited Disorders, Al Jawhara Center for Molecular Medicine
Assistant Professor of Molecular Medicine, Arabian Gulf University & University Medical Clinics
Chair, Rare Disease Campaign & Care for Rare Support Group, Manama, Kingdom of Bahrain
Dr. Dale Pugh
Project Consultant, Rare Care Centre, Perth Children’s Hospital, Perth, Australia
Prof. Domenica Taruscio
MD
Former Director, National Centre Rare Diseases, Istituto Superiore di Sanità (Italian National Institute of Health); Co-Founder & Board Member, Undiagnosed Diseases Network International (UDNI); Past President, International Collaboration on Rare Diseases and Orphan drugs (ICORD); and President, Study Centre KOS – Science, Art, Society, Rome, Italy
Dr. Douglas M. Sproule
MD, MSc
Chief Medical Officer, ML Bio Solutions, Palo Alto, California, USA
Ms. Emma Michl
Metabolism Nurse Practitioner & Advanced Practice Nurse II, Division of Genetics & Genomics, Boston Children’s Hospital, Boston, USA
Dr. Erin Connolly-Strong
PhD
Chief Medical Officer, Inocras, San Diego, California, USA
Dr. Ersen Kavak
Founder & CEO, Genomize INC., Istanbul, Turkey
Dr. Geethanjali Devadoss Gandhi
Post-doc, Laboratory of Genomic Medicine, Sidra Medicine, Doha, Qatar
Prof. Gong Mengchun
MD
Professor, Biomedical Engineering School, Guangdong Medical University, Guangdong, China
SVP and CMO, DHC Technologies, Beijing, China
Management Board Director, SNOMED International, London, United Kingdom
Diagnostic Science Committee Member, IRDiRC, Paris, France
Prof. Huma Cheema
MRCP (UK) DPGN(Lond)
Director, Foundation for Research in Genetic Medicine & Genomics
Chairperson, Pakistan Pediatric Association, Gastroenterology and Hepatology Group
National Program Director, Pediatric Gastroenterology, Hepatology, & Nutrition Fellowship
Professor Emeritus, Pediatric Gastroenterology, Hepatology, & Nutrition, the Children's Hospital & the University of Child Health, Lahore, Pakistan
Dr. Isidro Arévalo Vargas
MSc. Ph.D.
Student, Universidad de Zaragoza, Zaragoza, Fundación Española para el Estudio y Terapéutica de la Enfermedad de Gaucher (FEETEG), and Instituto de Investigación Sanitaria Aragón (IISA), Zaragoza, Spain.
Corporación Unificada Nacional de Educación Superior CUN, Bogotá, Colombia.
Ms. Kaila Stevens
Meeting Organizer, Global Nursing Network for Rare Diseases 2nd Meeting,
Program Manager, Rare Care Centre, Perth Children’s Hospital, Perth, Australia
Dr. Khalid Al-Thihli
MD, FRCPC, FCCMG
Senior Consultant Clinical & Biochemical Genetics, Genetic & Developmental Medicine Clinic, Sultan Qaboos University Hospital, Muscat, Oman
Dr. Khedidja Hedna
PhD, MPH, MScPharm
Associate Epidemiologist at University of Gothenburg, Gothenburg, Sweden
Mother of Child with Myasthenia Gravis
Dr. Kuldeep Singh
Head of Pathology, Wave Life Sciences, Lexington, Massachusetts, USA
Mr. Kyle Rooney
President, Angelman Syndrome Foundation, Aurora, Illinois, USA
Dr. Lama Bani Salameh
Medical Student, Faculty of Medicine, Jordan University of Science and Technology, Irbid, Jordan
Prof. Maha Zaki
MD, Ph.D
Professor, Clinical Genetics Department, Human Genetics & Genome Research Institute, National Research Centre.
Professor, Genetics Department, Armed Forces College of Medicine, Cairo, Egypt
Dr. Michael Segal
MD, PhD
Chief Scientist, SimulConsult, Massachusetts, USA
Mr. Mohammed AlBlowi
Senior Optometry Specialist, King Khaled Eye Specialist Hospital, Riyadh, Saudi Arabia
Dr. Nicholas Johnson
MD, MSCI, FAAN
Vice Chair of Research, Director of Center for Inherited Muscle Research (CIMR), and George Bliley Research Chair in Neurology, Virginia Commonwealth University, Richmond, Virginia, USA
Dr. Nisha Venugopal
PhD
Associate Director, Patient-Focused Programs and Operations, Indo US Organization for Rare Diseases (IndoUSrare), Herndon, Virginia, USA
Mrs. Parvathy Krishnan
Founder & Executive Director, Krishnan Family Foundation, USA
Dr. Petra Oliva
PhD
International Lead, ARCHIMED Life, Vienna, Austria
Dr. Rasha Al Safi
Consultant Pediatrics, Clinical Genetics, and Metabolic Disorders, Adan Hospital, Ahmadi, Kuwait
Prof. Rodrigo Pinheiro Araldi
Founder & Scientific Director, BioDecision Analytics Ltda, Sao Paulo, Brazil
Professor of Molecular Biology, Paulista School of Medicine, Federal University of Sao Paulo, Sao Paulo, Brazil
Dr. Rohaid Ali
MD
LPG Neurosurgery, Brown University, Providence, Rhode Island, USA
Dr. Rola Ba-Abbad
Chair of Ocular Genetics Services & Senior Consultant Ophthalmology,
King Khaled Eye Specialist Hospital, Riyadh, Saudi Arabia
Ms. Ruth Hosken
Nurse Practitioner, Huntington Disease & Movement Disorders, Calvary Health Care Bethlehem, Australia
Mrs. Sally Asfour
Treasurer, Foundation for Angelman Syndrome Therapeutics (FAST); and Mother of a Child with Angelman Syndrome, Sydney, Australia
Dr. Samuel JK Abraham
MD, PhD, FRCP(L)
Faculty of Medicine, University of Yamanashi and Head, Research and Development, GN Corporation, Japan
Ms. Sharron Meadows
Neuromuscular Nurse Specialist, Auckland District Health Board, Auckland, New Zealand
Dr. Souad Messahel
BSc, MSc, PhD
Clinical Neuroscientist and Head of Clinical Operations, Elpida Therapeutics, California, USA
Ms. Sue Baker
Meeting Convenor, Global Nursing Network for Rare Diseases 2nd Meeting,
Program Director, Rare Care Centre, Perth Children’s Hospital, Perth, Australia
Mr. Svein Olaf Olsen
President of the International Huntington Association, Søgne, Norway
Founder and Owner of Anzyz Technologies AS, Grimstad, Norway
Prof. Tawfeg Ben-Omran
MD, FRCPC, FCCMG, FACMG
Division Chief, Genetic & Genomic Medicine, Sidra Medicine
Senior Consultant, Medical Genetic Department, Hamad Medical Corporation
Professor, Weill Cornell Medical College, Doha, Qatar
Mr. Terry Pirovolakis
CEO, Elpida Therapeutics, California, USA
Ms. Tessa Diaczun
Nurse Practitioner and Clinical Lead, BC Children’s Hospital Slocan Site Redevelopment Project, BC Children’s Hospital, Vancouver, Canada
Prof. Uğur Özbek
Chair, RAREBOOST Project; Director, Rare and Undiagnosed Disease Platform; and Orphanet Country Coordinator, Izmir BioMedicine and Genome Center, Izmir, Turkey
Dr. Zainab Al-Sulaitti
Emergency Physician, University Hospital Hairmyres, Glasgow, Scotland, UK
Mrs. Zoe Morrison
Syndromes Without a Name Clinical Nurse Specialist,
Cardiff and Vale University Health Board, Wales, United Kingdom
Prof. Zulf Mughal
Consultant in Pediatric Bone Disease, Royal Manchester Children's Hospital
Professor in Child Health, Manchester University NHS Foundation Trust, Manchester, UK