Alba Ancochea is the CEO of Spanish Federation of Rare Diseases and its Foundation. She is a EURORDIS board of Directors member , as well as member of the Rare Diseases International Advocacy Working Group, member of the DITA (Drug Information ,Transparency and Access) Task Force, representative of the Council of National Alliances and supporting the Ibero-American Alliance of RD. She belongs to the CIBERER (Spanish Biomedical Research Consortium on RD )Scientific Advisory Board. She has completed undergraduate and masters studies in psychology, special needs teaching and management of NGOs.

Drug Development and Clinical Research

Alastair Kent was the executive director of Genetic Alliance UK, the British umbrella body for over 200 patient groups supporting that with rare and genetic disorders. Since retiring from Genetic Alliance UK he has continued his involvement as an independent advocate in health policy and service development that will improve support for those affected or at risk from these conditions.

rare and genetic disorders

Don Van Dyke is Chief Operating Officer at Cloud Pharmaceuticals. In his earl career, he held increasingly responsible general management, business development, and executive positions at American Hospital Supply, Dade Diagnostics, Eastman Kodak and Millipore Corporation.Van Dyke's work at the intersection of biological science and computer science began at startup Bio Image Corporation. The company became the market leader in image-based genomics and proteomics under his leadership as VP sales, VP worldwide marketing and sales, general manager, and CEO. The company merged with another firm and went public on the NASDAQ. He has had executive roles at Molecular Mining Corporation, a life science data mining company and INCOGEN, a Bioinformatics company and has advised more than a dozen start-ups and government agencies.

Sara Tylosky, CEO of Farmacon (www.farmacon.co) has over twenty years of experience in strategic management & global marketing in the pharmaceutical & biotech industries. Farmacon works with sponsors, from large pharmas to start up biotechs, through their network of expert consultants to tailor solutions for clinical trial research projects. Working in phase 2-4 trials, their model is to dispatch expert physicians and logistical support on the ground in each country to bring real-time feedback, provide strategic intelligence, uncover issues, and resolve problems to reach enrolment early and reduce study costs. This allows for more accurate data to be collected. Their particular specialty is in rare disease for projects that need assistance outside of us. Sara holds a master’s in business from Florida Atlantic University and an undergraduate degree from Whitman College.

Michael S. Wolfe received his B.S. in chemistry from the Philadelphia College of Pharmacy and Science and Ph.D. in medicinal chemistry from the University of Kansas. After postdoctoral stints at the University of Kansas and the NIH, he joined the faculty of the University of Tennessee in Memphis. In 1999, he moved to Harvard Medical School and Brigham and Women’s Hospital, where his work focused on understanding the molecular basis of Alzheimer’s and related disorders and identifying effective approaches for pharmacological intervention, becoming Professor of Neurology in 2008. He returned to the University of Kansas in October of 2016 as the Mathias P. Mertes Professor of Medicinal Chemistry. Awards for his work include the Sato Memorial International Award in bioorganic and medicinal chemistry from the Pharmaceutical Society of Japan, the MetLife Award for Biomedical Research, a Zenith Fellows Award from the Alzheimer’s Association, and the Potamkin Prize from the American Academy of Neurology.

Alzheimer’s Disease

Dr. KrupaTorne is among the few super-specialists who have been internationally trained in the field of Paediatric Neurology. At present, she is heading the Department of Neurosciences at Surya Children’s multispecialty Hospital in Mumbai, India. She has completed her Fellowship in Paediatric Neurology and Epilepsy from Maharashtra University Health Sciences at Lokmanya Tilak Municipal Hospital and Lokmanya Tilak Municipal Medical College, Mumbai. She has had a brief stint at the University College London Hospital, a premier academic institution cum hospital in the UK. She has been trained in Paediatric Neurology at Birmingham Children's Hospital where she successfully completed her International Fellowship in Paediatric Neurology, Epilepsy and Neurorehabilitation. She was honored by International Bursary from European Paediatric Neurology Society with an opportunity to attend one of the prestigious courses in Paediatric Neuromuscular disorder and Neonatal Neurology at Budapest in Hungary. She is affiliated with many International and National Paediatric Neurology and Epilepsy associations.

Her research interest is in complex paediatric epilepsies, ketogenic diet and paediatric movement disorder.

Masoabi currently serves as a administrative coordinator for the South African Haemophilia Foundation and also serves as a Chairperson for the South African Haemophilia Foundation Youth Council.

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Dr. Abdul Matin received his PhD from Birkbeck, University of London followed by a Postdoctoral Fellowship from School of Medicine, Southampton University Hospital, Southampton, United Kingdom. His long-standing research interests include the epidemiology and pathogenic mechanism of emerging parasitic diseases with special interest on role of Blood-Brain Barrier in Central Nervous System infections. Using multi-disciplinary approach he is looking for potential novel synthesized compounds or nanoparticles or/and obtained from plants or insects to discover potential drug candidates or/and for drug delivery system to alleviate the burden of life threatening infections. He is conducting research using state-of-the-art technologies in the field of infectious diseases. He is recipient of various international and national awards, honors and grants. He is currently Associate Professor at Majmaah University, Saudi Arabia. He has published >36 research articles in reputed journals and is serving as an editorial board member and reviewer for various international and national reputed journals and funding agencies.

parasitic diseases

Dr. Ellahham has served as Chief Quality Officer for SKMC since 2009. In his role, Dr. Ellahham has led the development of a quality and safety program that has been highly successful and visible and has been recognized internationally by a number of awards. As Chief Quality Officer and Global Healthcare Leader, Dr. Ellahham had a focus on ensuring that that implementation of these best practices leads to breakthrough improvements in clinical quality, patient safety, patient experience and risk management. Dr. Ellahham is a Board-certified internist, cardiologist and vascular medicine senior consultant and continues to care for patients. He received his undergraduate degree in biology and his M.D. from the American University of Beirut, Beirut, Lebanon.

Cardiology

She currently holds the positions of Senior Executive Vice President of MaxifyLife, Corporate Engagement Manager of the Jansen’s Foundation, Global Gene’s Foundation Alliance Council Member and Founding Board Member of Rare is Not Rare. Recently, Nadia has also facilitated and coordinated the development of the Rare Advocacy Movement (RAM), a patient advocacy initiative focused on documenting the ever-evolving complex structure and unique dynamics of the rare disease patient advocacy landscape.

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Strategic and creative consultant in biomedical science, with a parallel career in the Dutch Civil-Military Interaction Command in which he has responsibility for the counter measures in CBNRe threats and (medical) consequence management both in a military and a civilian (terrorism) setting. He was the director of the 2014 & 2016 World Congress of CBRNe Science & Consequence Management in Tbilisi, Georgia. He works internationally as consultant or scientific supervisory board member for several medical and biotech companies, merely involved in biodefense, clinical diagnostics and therapies. He is also visiting professor for Punjab University in Pakistan and Rhein-Waal University in Germany and visiting professor at the University of Rome Tor Vergata. He has finished both his studies in Medicine and in Biochemistry at the University of Groningen in The Netherlands and has extensive practical experience in cell biology, immuno-haematology, biodefense and transfusion medicine. His natural business acumen and negotiation competence helps to initiate new successful businesses, often created out of unexpected combinations of technologies. His thorough understanding of abstract science combined with excellent skills in the communication of scientific matters to non-specialists, helps him with strategic consulting at top level management.

Ebola

Mr. Schliebner is a clinical strategist with a 25-year background in clinical drug development focused on rare diseases, orphan drugs, and advanced therapeutics. He develops innovative solutions and strategic considerations to help overcome the operational, logistical, and ethical challenges inherent to conducting research with rare disease patients. Mr. Schliebner’s efforts are focused on patient-centered approaches to drug development; reducing the burden of clinical trial participation; and leveraging novel and disruptive technologies to bring new therapies to patients faster. Committed to collaborative efforts to further drug development, Mr. Schliebner has developed active partnerships with rare disease patient-focused organizations, patient advocacy groups, drug development institutes, and academic research centers. He serves on leadership committees for a variety of rare disease societies and congresses, and also regularly speaks on novel strategies to accelerate rare disease drug development. Previously, Mr. Schliebner served as the Chief Operating Officer for an international cancer research institute focused on developing tumor-specific research consortia to accelerate the development of new targeted therapies. He holds a Master’s Degree in Public Health (MPH) from the University of Utah School of Medicine, and completed a Graduate Research Fellowship at The National Institutes of Health.

rare diseases, orphan drugs, and advanced therapeutics

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I earned a Medical Doctorate (MD) in Community Medicine, Master Degree in Public & Tropical Health, Master Degree in Tropical Medicine & Infectious Diseases, Postgraduate Diploma in Public Health, Certificate of Diploma Course in Epidemiology & Biostatistics and a Bachelor’s degree in of Medicine & Surgery. Currently, I am working in the UAE as a Community Medicine Specialist, at Central Directorate of Preventive Medicine with Ministry of Health & Prevention where under the National Program of Expanded Immunization (EPI), I am managing National Poliomyelitis Eradication Program and National Program for Elimination of Measles and Rubella by following guidelines of Global Polio Eradication Initiative (GPEI) and the World Health Organization (WHO). Also I am technically supporting the National EPI program in maintaining high immunization coverage against: Poliomyelitis, Measles and Rubella. Conduction of random supervision visits is a key responsibility to me as implemented active surveillance activities at high priority sites could be verified.

Epidemiology

Tiziana Greggi Specialized works in Orthopedics and Traumatology, at the University of Bologna, Specialized in Biomedical Technologies, at the University of Bologna and she is the Head of Simple Departmental Structure: Spinal deformity surgery. She has worked in the Division of Spine Surgery of the Rizzoli Institute, first as an assistant and then as a senior manager. From 2000 to 2008 he received temporary positions as Director of a complex structure. From the end of this position to date has been responsible for the Organizational Module "the spinal deformities in pediatric age and associated with rare diseases" in the same Division. He is also responsible for a specialized clinic dedicated to the study and treatment of severe spinal deformities associated with rare diseases at the Rizzoli Orthopedic Institute. He is currently Head of the Departmental Simple Structure: Spinal deformity surgery

Spinal deformit, Spinal Surgery

Dr. Bhat has over 18 years’ experience in drug discovery and development and prior to founding Reviva, he held research positions at XenoPort, ARYx Therapeutics and Higuchi Biosciences Center in the United States. Dr. Bhat has received a global post-doctoral training at the University of Kansas, USA, the Georg-August-Universität, Göttingen, Germany and the Université du Maine, France. In 1995, he was selected for the Alexander von Humboldt fellowship, an internationally recognized award for young scientists to pursue advanced research in Germany. Dr. Bhat received his Ph.D. in synthetic organic chemistry from the Central University (NEHU), India and has authored over 15 research papers published in peer-reviewed scientific journals. Dr. Bhat is an inventor on more than 100 filed patents and over 35 granted patents

Drug Discovery

The Department of Department of Infectious Diseases / Tropical Medicine, Nephrology and Rheumatology at St. Georg Hospital in Leipzig is about regional focus clinic and competence center for infectious diseases for the state of Saxony

Infectious Diseases & Resarch

Stef Stienstra works internationally for several medical and biotech companies as scientific advisory board member and is also an active reserve-officer of the Royal Dutch Navy in his rank as Commander (OF4). For the Dutch Armed Forces he is CBRNe specialist with focus on (micro)biological and chemical threats and medical- and environmental functional specialist within the 1st CMI (Civil Military Interaction) Battalion of the Dutch Armed Forces. For Expertise France he is now managing an EU CBRN CoE public health project in West Africa. In his civilian position he is at this moment developing with MT-Derm in Berlin (Germany) a novel interdermal vaccination technology as well as a new therapy for cutaneous leishmaniasis for which he has won a Canadian ‘Grand Challenge’ grant. With Hemanua in Dublin (Ireland) he has developed an innovative blood separation unit, which is also suitable to produce convalescent plasma for Ebola Virus Disese therapy. He has finished both his studies in Medicine and in Biochemistry in The Netherlands with a doctorate and has extensive practical experience in cell biology, immuno-haematology, infectous diseaases, biodefense and transfusion medicine. His natural business acumen and negotiation competence helps to initiate new successful businesses, often generated from unexpected combinations of technologies.

Infectious Diseases

An expert in international health initiatives, health in developing nations, HIV/AIDS research

Infection Diseases, Neglected Diseases

Romina Ortiz completed her Bachelor’s and Master’s degrees at Johns Hopkins University in Neuroscience and Molecular Microbiology and Immunology, respectively. Her thesis focused on the interplay between the microbiome and hormones in autoimmune disease. She is a co-founder of Rare Genomics Institute (RG), COO and VP of Patient Advocacy at RG. In 2016 she was awarded the Patient Advocacy Leadership award by Sanofi Genzyme. She trains volunteers on the topics of Genetics and Sequencing, directs a Patient Advocacy Program in next generation sequencing and research services to undiagnosed and rare disease patients and currently directs a philanthropic program with Illumina called iHope, offering free whole genome sequencing to children in need of a diagnosis.

Her goal is to integrate phenotypic medical information with genomic data to identify the genetic cause to disease and accelerate the path to treatment and a cure.

Dr. David Dongliang Ge is CEO and President of Apostle. Apostle Inc is a biotechnology company in Sunnyvale, CA focusing on novel bioinformatics-enabled nanotechnologies for cancer early detection. Previously, he was President of BioSciKin Co. and Simcere Diagnostics Co., two global biotechnology companies headquartered in Nanjing, China focusing on the licensing and sales of diagnostic technologies. Between 2011 and 2016, he was Director of Bioinformatics at Gilead Sciences, where he founded and provided leadership to the bioinformatics group and provided the strategic input to related infrastructure and process. Dr. Ge and his group led the phylogenomic analytical support for the critical regulatory approval of Sovaldi, a world-leading anti-HCV drug. In 2014 and 2015, Dr. Ge was invited to be a member of the U.S. National Human Genome Research Institute Special Emphasis Panel. Prior to Gilead, he was appointed as Assistant Professor of Biostatistics and Bioinformatics and Assistant Professor in Medicine at Duke University School of Medicine. He received his Ph.D. of Biostatistics and Genetic Epidemiology from Peking Union Medical College and Chinese Academy of Medical Sciences in 2004. Dr. Ge’s work in discovering the IL28B genetic variants associated with the clinical treatment responses, published in Nature in 2009, has received over 3000 times of citations to date. The invention was licensed to LabCorp and Quest Diagnostics, and has become clinical diagnostic services since then (LabCorp 480630 and Quest AccuType® IL28). The U.S. FDA has cited this ground-breaking discovery in several of the agency’s guidance for industry. Dr. Ge has authored or co-authored over 70 peer-reviewed articles, among which are 5 articles in Nature and 1 in Science, in total receiving over 15,000 citations. Dr. Ge was named by the U.S. Genome Technology magazine as one of the “Rising Stars” in 2009, and by the U.K. Phacilitate as one of the "Top 50 Most Influential People in Big Data" in 2015.

Daniel Cohen , MD Phd, former Professor of Medical Genetics in Paris University has authored more than 150 peer reviewed papers in hire wired Journal , including the first integrated map of the Human Genome back in the 90’s. While he has discovered or co discovered numerous genes for rare and common diseases, he has also pioneered several key technologies like Large Scale Biology at Genethon, he cofounded in France, but also Pharmacogenomics, Genome Wide Association Studies and Network Pharmacology. He was a confounder of Millenium pharmaceuticals in Boston, MA. He is now Chairman, CEO and cofounder of the France Based company, Pharnext, focusing on treatment of unmet Neurodegenerative disorders by using Network Pharmacology.

orphan genetic

Dr. Harsha Rajasimha has over 15 years of experience and widely recognized in the field of Genomics, systems biology data integration standards, BigData analytics, data enabled life sciences, and precision medicine for cancer and rare disease diagnosis. Dr. Rajasimha is currently global head of life sciences R&D for NTT DATA Services (formerly Dell Services). He co-directs the center for metabolic and rare diseases at George Mason University. Earlier, he led the global strategy and business development for Strand Life Sciences, a CAP/CLIA laboratory and Bioinformatics powerhouse and precision medicine diagnostics company, between 2013 and 2016. Dr. Rajasimha founded Jeeva Informatics Solutions (www.Jeevadx.com) in 2013, a cloud based genomic data informatics Company that received the ‘Bioscience Company of the Year 2014’ award from Montgomery County, MD. He is co-founder and board member of the non-profit organization for rare diseases India (www.ordindia.org) and established mechanisms to accelerate rare disease diagnosis, public health policies and accessibility of treatments for patients in India. Dr. Rajasimha has led the development of some of the largest genomics projects including PathogenPortal, Pathosystems resource integration center, Cancer Biomedical Informatics Grid (caBIG), LIMS implementation at the FDA Office of Regulatory Affairs, architected Genome Explorer® a web-based platform for next-generation sequencing (NGS) data analysis for Genome International Corporation and Cyberinfrastructure development for National Eye Institute's genomics program. His contributions to the NGS program were recognized by NEI director’s innovation award in 2012. Dr. Rajasimha has authored over 15 peer-reviewed articles, book chapters, inventor on patents and is often invited speaker at international conferences and executive consultant/advisor to a number of biotech startups. He has contributed to global data standards initiatives such as BioPAX, DELSAGlobal, personalized medicine coalition, and the global alliance for genomics and health. He earned baccalaureate degree in computer science engineering from Bangalore University, Masters in Computer Science & Bioinformatics and Doctoral degree in interdisciplinary program genetics, bioinformatics and computational biology from Virginia Tech.

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Amrik Sahota is a professor in the Department of Genetics, Rutgers University, Piscataway, NJ. He is also a clinical professor in the Department of Pathology and Laboratory Medicine and in the Division of Urology, Department of Surgery, Rutgers Robert Wood Johnson Medical School, New Brunswick, NJ. Dr. Sahota is a fellow of the American College of Medical Genetics and Genomics, National Academy of Clinical Chemistry, Royal Society of Biology (UK), and the Royal College of Pathologists (UK). He is board-certified in clinical molecular genetics by the American Board of Medical Genetics and Genomics and in molecular diagnostics by the American Board of Clinical Chemistry.

Dr. Sahota’s research interests are in genetic disorders of urolithiasis, mouse models for human disease, and molecular diagnostics.

Stella Blackburn has spent over 30 years in pharmacovigilance and pharmacoepidemiology in both regulatory and industry environments. Trained in medicine at Cambridge and London Universities she has an MSc in epidemiology from the London School of Hygiene and Tropical Medicine. At the European Medicines Agency she was responsible for developing risk management for Europe and was the lead author of the guidelines. She is passionate about optimizing the benefit risk balance of medicines and to helping bring medicines to patients with unmet medical needs – particularly those with rare diseases. She is a Visiting Scientist at the Center for Biomedical Innovation, Massachusetts Institute of Technology where she continues work on innovative methods for bringing medicines to market. She is a Fellow of the Royal College of Physicians of Edinburgh and a Fellow and Past President of the International Society of Pharmacoepidemiology.

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Dr. Jacques P. Tremblay received a PhD in Neuroscience from the University of California at San Diego in 1974. Since that time, he has been at Laval University as a postdoctoral researcher, Professor and Director of the Department of Anatomy. He is currently Full Professor in the Department of Molecular Medicine. He has published over 250 scientific articles on hereditary diseases. He has worked specifically on myoblast transplantation as a treatment for Duchenne muscular dystrophy. For the last 3 years he also worked on gene correction with the CRISPR/Cas9 technology for Duchenne muscular dystrophy, Friedreich's Ataxia and Alzheimer’s disease.

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Dr. Anton Yuryev received PhD in Molecular Biology and Genetics at Johns Hopkins University, Baltimore USA where he discovered proteins physically linking gene transcription and mRNA processing in eukaryotic cells. He has over 20 years of experience in bioinformatics. After finishing his post-doctoral training at Novartis Inc Dr. Yuryev worked as Senior Scientist at InforMax, then continued at Orchid Bioscience as Senior Bioinformatics Analyst, and then founded Ariadne Genomics where he worked as Senior Director of Application Science and participated in the development of natural language processing technology and Pathway Studio software. Dr. Yuryev has published more than 50 scientific publications, edited three scientific books, and authored several algorithms for primer design and pathway analysis. After Elsevier acquisition of Ariadne Genomics Dr. Yuryev works as Professional Services Director at Elsevier and responsible for development of targeted bioinformatics solutions using Elsevier software and knowledgebases in the areas of drug development, personalized medicine and agrobiology.

Dr. Yuryev’s research interests involve developing statistical models for drug repurposing, drug target prioritization and therapy optimization based on molecular mechanisms for all kinds of human malignancies including rare and complex diseases.

Glenn S Tillotson has over 30 years pharmaceutical experience in pre-clinical and clinical research, commercialization, medical affairs, scientific communications including publication planning strategic drug development, life cycle management and global launch programs. He has been instrumental in the development and launch of ciprofloxacin, moxifloxacin, gemifloxacin, fidaxomicin and several other agents. He is a SVP of Medical Affairs where he is preparing for the launch of solithromycin for community acquired bacterial pneumonia. He has published more than 170 peer-reviewed manuscripts and is on several journal Editorial Advisory Boards including the Lancet Infectious Disease, eBioMedicine, Expert Reviews in Anti-infective Therapy and F1000.

Infectious diseases

Joanna Zajkowska is currently working at Medical University of Białystok, Poland and carries Clinical Research on infectious diseases, especially on tick-borne diseases and nervous system diseases. She is an expert in internal medicine, infectious diseases, public health and epidemiology. She is a Member of ISW-TBE, Wien Austria (International Scientific Working group on Tick-Borne Encephalitis and ESGBOR (ESCMID-European Society of Clinical Microbiology and Infectious Diseases). She has published more than 200 papers in reputed journals and serving as a Reviewer in many journals.

Clinical Research on infectious diseases, especially on tick-borne diseases and nervous system diseases

Stef Stienstra is a strategic and creative Consultant in Biomedical Science with a parallel career as a Commander of the reserve of the Royal Dutch Navy. For the Dutch Armed Forces he has responsibility for the counter measures in CBNRe threats and (Medical) consequence management both in a military and a civilian (terrorism) setting. He is a strategic functional specialist for “Health & Environment” of the 1-Civil-Military-Interaction Command (1-CMI) of the Dutch Armed Forces and for 2015 also in the NATO Response Force (NRF), which is in 2015 the responsibility of the 1-German-Netherlands-Corps (1-GNC). In his civil career he works internationally as Consultant or as Scientific Supervisory Board Member for several medical and biotech companies, merely involved in biodefense. He is also a Visiting Professor for Punjab University in Pakistan and Rhein-Waal University in Germany. He has completed his studies in Medicine and in Biochemistry at the University of Groningen in The Netherlands and has extensive practical experience in cell biology, immuno-hematology, biodefense and transfusion medicine. His natural business acumen and negotiation competence helps to initiate new successful businesses, often created out of unexpected combinations of technologies. His good understanding of abstract science combined with excellent skills in the communication of scientific matters to non-specialists, helps him with strategic consulting at top level management.

Ebola

Eugenie Bergogne-Berezin is a Professor of Clinical Microbiology at University Diderot, Paris. She has studied MD in Medicine and PhD in Sciences in the early 1970s. She is a Chief of Department of Clinical Microbiology and research group, University Bichat Claude-Bernard and developed research on Acinetobacter spp., (nosocomial pathogen, pathogenicity, resistance), pharmacology of antibiotics, tissue distribution (lungs, brain, bronchi), research on intestinal ecology, jejunal flora and bacterial adhesion. She is an Adviser to pharmaceutical companies, expert in pharmacology-toxicology for the Ministry of Health, expert for international journals. She has developed a journal Antibiotics, (Elsevier). She has published 6 medical books, many chapters in international infectious diseases books, 200 articles in scientific journals.

Antibiotics

K C Santosh worked as a research fellow at the U.S. National Library of Medicine (NLM), National Institutes of Health (NIH). He worked as a postdoctoral research scientist at the LORIA research centre, Universite de Lorraine in direct collaboration with industrial partner ITESOFT, France, for 2 years. He also worked as a research scientist at the INRIA Nancy Grand Est research centre for 3 years, until 2011. K C Santosh has demonstrated expertise in pattern recognition, image processing, computer vision and machine learning with various applications in handwriting recognition, graphics recognition, document information content exploitation, medical image analysis and biometrics. He published more than 60 research articles, including a book section in encyclopedia of electrical and electronics engineering.

Electrical and electronics engineering

Fernanda De Freitas Anibal had her PhD from University of São Paulo, Brazil in Basic and Applied Immunology. She is a Principal Investigator at Laboratory of Parasitology (Federal University of São Carlos) seeks new tools for the treatment, prevention and diagnostics for infectious diseases. Currently, they are working with two plants and six enzymes and their effects against schistosomiasis mansoni and toxocariasis, about the treatment of the infectious diseases, their group studies effects of plants (extracts) and their isolated fractions in order to evaluate the anti-parasitic and anti-inflammatory effects and for infectious disease prevention, moreover have been working on the evaluation of the proteins of the parasite that has been potential to induce immune responses that decrease the parasite burden.

Immune Responses

Lalit Garg has received his PhD degree from the University of Ulster, UK in 2010. He has received his first degree in Electronics & Communication Engineering from the Barkatullah University, India in 1999 and Postgraduate degree in Information Technology from ABV-IIITM, Gwalior, India in 2001. He is currently a Senior Lecturer in Computer Information Systems at the University of Malta, Malta. He was a Researcher at the Nanyang Technological University, Singapore and at the University of Ulster, UK. His research interests include missing data handling, machine learning, data mining and their applications especially in the healthcare domain. He has published more than 60 technical papers in refereed journals and conferences.

Electronics and communication engineering

Junie Lia Monica is an MD, Ph D, Professor, Head Microbiology Department, "Iuliu Hatieganu" University of Medicine and Pharmacy, Cluj Napoca, Romania. She is a Coordinator of resident doctor’s in the Laboratory Medicine specialty and Leadership PhD doctor’s thesis in Medicine field. She is a Board Member of European professional Societies ESCMID (ESGCP Study Groups), Society of Chemotherapy, Scientia Parasitologica Pro Vita and is a Reviewer of international reviews, Member of International organizations, Director/Coordinator in research projects. She has more than 63 papers published in full in international journals and is an editorial board member of national reviews. She is an Organizer/President, Keynote, Invited Speaker and Chair of International and National Congresses.

Microbiology

Romina Ortiz completed her Bachelor’s and Master’s degrees at Johns Hopkins University in Neuroscience and Molecular Microbiology and Immunology, respectively. Her thesis focused on the interplay between the microbiome and hormones in autoimmune disease. She is a co-founder of Rare Genomics Institute (RG), COO and VP of Patient Advocacy at RG. In 2016 she was awarded the Patient Advocacy Leadership award by Sanofi Genzyme. She trains volunteers on the topics of Genetics and Sequencing, directs a Patient Advocacy Program in next generation sequencing and research services to undiagnosed and rare disease patients and currently directs a philanthropic program with Illumina called iHope, offering free whole genome sequencing to children in need of a diagnosis.

Her goal is to integrate phenotypic medical information with genomic data to identify the genetic cause to disease and accelerate the path to treatment and a cure.

Dr. David Dongliang Ge is CEO and President of Apostle. Apostle Inc is a biotechnology company in Sunnyvale, CA focusing on novel bioinformatics-enabled nanotechnologies for cancer early detection. Previously, he was President of BioSciKin Co. and Simcere Diagnostics Co., two global biotechnology companies headquartered in Nanjing, China focusing on the licensing and sales of diagnostic technologies. Between 2011 and 2016, he was Director of Bioinformatics at Gilead Sciences, where he founded and provided leadership to the bioinformatics group and provided the strategic input to related infrastructure and process. Dr. Ge and his group led the phylogenomic analytical support for the critical regulatory approval of Sovaldi, a world-leading anti-HCV drug. In 2014 and 2015, Dr. Ge was invited to be a member of the U.S. National Human Genome Research Institute Special Emphasis Panel. Prior to Gilead, he was appointed as Assistant Professor of Biostatistics and Bioinformatics and Assistant Professor in Medicine at Duke University School of Medicine. He received his Ph.D. of Biostatistics and Genetic Epidemiology from Peking Union Medical College and Chinese Academy of Medical Sciences in 2004. Dr. Ge’s work in discovering the IL28B genetic variants associated with the clinical treatment responses, published in Nature in 2009, has received over 3000 times of citations to date. The invention was licensed to LabCorp and Quest Diagnostics, and has become clinical diagnostic services since then (LabCorp 480630 and Quest AccuType® IL28). The U.S. FDA has cited this ground-breaking discovery in several of the agency’s guidance for industry. Dr. Ge has authored or co-authored over 70 peer-reviewed articles, among which are 5 articles in Nature and 1 in Science, in total receiving over 15,000 citations. Dr. Ge was named by the U.S. Genome Technology magazine as one of the “Rising Stars” in 2009, and by the U.K. Phacilitate as one of the "Top 50 Most Influential People in Big Data" in 2015.

Daniel Cohen , MD Phd, former Professor of Medical Genetics in Paris University has authored more than 150 peer reviewed papers in hire wired Journal , including the first integrated map of the Human Genome back in the 90’s. While he has discovered or co discovered numerous genes for rare and common diseases, he has also pioneered several key technologies like Large Scale Biology at Genethon, he cofounded in France, but also Pharmacogenomics, Genome Wide Association Studies and Network Pharmacology. He was a confounder of Millenium pharmaceuticals in Boston, MA. He is now Chairman, CEO and cofounder of the France Based company, Pharnext, focusing on treatment of unmet Neurodegenerative disorders by using Network Pharmacology.

orphan genetic

Dr. Harsha Rajasimha has over 15 years of experience and widely recognized in the field of Genomics, systems biology data integration standards, BigData analytics, data enabled life sciences, and precision medicine for cancer and rare disease diagnosis. Dr. Rajasimha is currently global head of life sciences R&D for NTT DATA Services (formerly Dell Services). He co-directs the center for metabolic and rare diseases at George Mason University. Earlier, he led the global strategy and business development for Strand Life Sciences, a CAP/CLIA laboratory and Bioinformatics powerhouse and precision medicine diagnostics company, between 2013 and 2016. Dr. Rajasimha founded Jeeva Informatics Solutions (www.Jeevadx.com) in 2013, a cloud based genomic data informatics Company that received the ‘Bioscience Company of the Year 2014’ award from Montgomery County, MD. He is co-founder and board member of the non-profit organization for rare diseases India (www.ordindia.org) and established mechanisms to accelerate rare disease diagnosis, public health policies and accessibility of treatments for patients in India. Dr. Rajasimha has led the development of some of the largest genomics projects including PathogenPortal, Pathosystems resource integration center, Cancer Biomedical Informatics Grid (caBIG), LIMS implementation at the FDA Office of Regulatory Affairs, architected Genome Explorer® a web-based platform for next-generation sequencing (NGS) data analysis for Genome International Corporation and Cyberinfrastructure development for National Eye Institute's genomics program. His contributions to the NGS program were recognized by NEI director’s innovation award in 2012. Dr. Rajasimha has authored over 15 peer-reviewed articles, book chapters, inventor on patents and is often invited speaker at international conferences and executive consultant/advisor to a number of biotech startups. He has contributed to global data standards initiatives such as BioPAX, DELSAGlobal, personalized medicine coalition, and the global alliance for genomics and health. He earned baccalaureate degree in computer science engineering from Bangalore University, Masters in Computer Science & Bioinformatics and Doctoral degree in interdisciplinary program genetics, bioinformatics and computational biology from Virginia Tech.

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Amrik Sahota is a professor in the Department of Genetics, Rutgers University, Piscataway, NJ. He is also a clinical professor in the Department of Pathology and Laboratory Medicine and in the Division of Urology, Department of Surgery, Rutgers Robert Wood Johnson Medical School, New Brunswick, NJ. Dr. Sahota is a fellow of the American College of Medical Genetics and Genomics, National Academy of Clinical Chemistry, Royal Society of Biology (UK), and the Royal College of Pathologists (UK). He is board-certified in clinical molecular genetics by the American Board of Medical Genetics and Genomics and in molecular diagnostics by the American Board of Clinical Chemistry.

Dr. Sahota’s research interests are in genetic disorders of urolithiasis, mouse models for human disease, and molecular diagnostics.

Stella Blackburn has spent over 30 years in pharmacovigilance and pharmacoepidemiology in both regulatory and industry environments. Trained in medicine at Cambridge and London Universities she has an MSc in epidemiology from the London School of Hygiene and Tropical Medicine. At the European Medicines Agency she was responsible for developing risk management for Europe and was the lead author of the guidelines. She is passionate about optimizing the benefit risk balance of medicines and to helping bring medicines to patients with unmet medical needs – particularly those with rare diseases. She is a Visiting Scientist at the Center for Biomedical Innovation, Massachusetts Institute of Technology where she continues work on innovative methods for bringing medicines to market. She is a Fellow of the Royal College of Physicians of Edinburgh and a Fellow and Past President of the International Society of Pharmacoepidemiology.

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Dr. Jacques P. Tremblay received a PhD in Neuroscience from the University of California at San Diego in 1974. Since that time, he has been at Laval University as a postdoctoral researcher, Professor and Director of the Department of Anatomy. He is currently Full Professor in the Department of Molecular Medicine. He has published over 250 scientific articles on hereditary diseases. He has worked specifically on myoblast transplantation as a treatment for Duchenne muscular dystrophy. For the last 3 years he also worked on gene correction with the CRISPR/Cas9 technology for Duchenne muscular dystrophy, Friedreich's Ataxia and Alzheimer’s disease.

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Dr. Anton Yuryev received PhD in Molecular Biology and Genetics at Johns Hopkins University, Baltimore USA where he discovered proteins physically linking gene transcription and mRNA processing in eukaryotic cells. He has over 20 years of experience in bioinformatics. After finishing his post-doctoral training at Novartis Inc Dr. Yuryev worked as Senior Scientist at InforMax, then continued at Orchid Bioscience as Senior Bioinformatics Analyst, and then founded Ariadne Genomics where he worked as Senior Director of Application Science and participated in the development of natural language processing technology and Pathway Studio software. Dr. Yuryev has published more than 50 scientific publications, edited three scientific books, and authored several algorithms for primer design and pathway analysis. After Elsevier acquisition of Ariadne Genomics Dr. Yuryev works as Professional Services Director at Elsevier and responsible for development of targeted bioinformatics solutions using Elsevier software and knowledgebases in the areas of drug development, personalized medicine and agrobiology.

Dr. Yuryev’s research interests involve developing statistical models for drug repurposing, drug target prioritization and therapy optimization based on molecular mechanisms for all kinds of human malignancies including rare and complex diseases.

Daniel Cohen , MD Phd, former Professor of Medical Genetics in Paris University has authored more than 150 peer reviewed papers in hire wired Journal , including the first integrated map of the Human Genome back in the 90’s. While he has discovered or co discovered numerous genes for rare and common diseases, he has also pioneered several key technologies like Large Scale Biology at Genethon, he cofounded in France, but also Pharmacogenomics, Genome Wide Association Studies and Network Pharmacology. He was a confounder of Millenium pharmaceuticals in Boston, MA. He is now Chairman, CEO and cofounder of the France Based company, Pharnext, focusing on treatment of unmet Neurodegenerative disorders by using Network Pharmacology.

orphan genetic

Serge Braun, PharmD, is Scientific Director of AFM-Telethon since 2005, the French Muscular dystrophy Association, and President of Genosafe, a CRO company dedicate to QC of biotherapeutic products. He obtained his degree in Pharmacy and a Ph.D in Pharmacology from the Louis Pasteur University of Strasbourg, France; was a postdoctoral fellow at the Neuromuscular Center, School of Medicine of the University of Southern California in Los Angeles, USA.

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In 2015 Dr. Arneric joined the Critical Path Institute as Executive Director of the Coalition Against Major Diseases (CAMD), a consortium focused on developing Drug Development Tools for advancing innovative treatments of Alzheimer’s disease and related dementias. Previously he was VP Research/Preclinical Development (Neuromed Pharmaceuticals), CSO of the Pain/Migraine Drug Hunting Team (Lilly), and held senior management positions at Pfizer, Pharmacia, DuPont Pharmaceuticals, and Abbott. He has extensive leadership and scientific expertise in the areas of neurology, pain, psychiatry and urology, and over the last 25 years his teams have delivered more than 30+ drug candidates into clinical development.

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Dr Stephen Shrewsbury is currently Executive Vice President of Development and Chief Medical Officer at Fortuna Fix, leading their novel cellular technology into multiple clinical programs focused on Regenerative Medicine, several of which are rare diseases. A UK trained physician, Dr Shrewsbury first joined Glaxo 23 years ago. He moved to lead inhaled antibiotic programs at Chiron Corporation (in Cystic Fibrosis and other rare diseases) before becoming CMO sequentially to MAP Pharmaceuticals, Adamas Pharmaceuticals, AVI BioPharma (now Sarepta Therapeutics – where he opened their first IND for eteplirsen in Duchenne Muscular Dystrophy and planned their oligomer programs against Ebola and Marburg Hemorrhagic Fevers) and Aquinox Pharmaceuticals. He has now moved from Drugs (and Devices) and Oligonucleotides to lead programs with directly reprogrammed precursor cells and tackle many rare, and currently untreatable, diseases with great social and healthcare impact. He is author of Defy Your DNA and over 70 scientific papers, holds several patents and contributed to many awarded grants – mostly for work on rare diseases.

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Dr. Sahota works at Rutgers University in the following capacities: (i) professor in the Department of Genetics, (ii) director of scientific programs and director of the Clinical Genomics Laboratory, RUCDR Infinite Biologics; (iii) clinical professor and laboratory director in the Department of Pathology and Laboratory Medicine, Robert Wood Johnson Medical School (RWJMS); and (iv) clinical professor in the Division of Urology, RWJMS. Dr. Sahota’s research is focused on the molecular pathology of inherited urinary tract stone disease. He and his colleagues have characterized the molecular bases of adenine phosphoribosyltransferse (APRT) deficiency in the vast majority of Caucasian patients with this disorder.

Dr. Sahota’s research is focused on the molecular pathology of inherited urinary tract stone disease.

Pat Furlong is the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Their mission is to end Duchenne. They accelerate research, raise their voices in Washington, demand optimal care for all young men, and educate the global community.

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Prof Annemieke Aartsma-Rus obtained her PhD aged 27 at Leiden University (the Netherlands) in 2005. She became group leader in 2007 and is currently a professor of Translational Genetics at Leiden University Medical Center, the Netherlands. She currently chairs the TREAT-NMD Alliance (an infrastructure network for clinical trial readiness for neuromuscular disorders) and a networking Action (funded by Cooperation of Science and Technology (COST). She has published more than 100 papers in peer reviewed journals, has written multiple book chapters and has generated and maintains pages to explain Duchenne therapies in lay terms to the patient community. In 2009 she received the Duchenne award from the Dutch Duchenne Parent Project for her dedication to the field.

Duchenne muscular dystrophy

Indira T Kudva is a Research Microbiologist and Lead Scientist at the National Animal Disease Center, USDA, Ames, Iowa. She has received her BSc in Zoology and MSc in Medical Microbiology degrees from India, PhD in Microbiology, Molecular Biology and Biochemistry from the University of Idaho and trained as a Postdoctoral Fellow at the University of Idaho, Massachusetts General Hospital and Harvard Medical School. She has over 25 years of experience in the field of microbiology, molecular biology and infectious diseases. She has 29 peer-reviewed publications, 3 invited reviews, 27 meeting abstracts, 18 invited talks, 8 funded grants and novel inventions (4 patent applications). She is also an adjunct Assistant Professor at the School of Veterinary Medicine, Iowa State University; the Executive Editor for the “Virulence Mechanisms of Bacterial Pathogens” book, 5th Edition, ASM press and is on the Editorial Boards of the Applied and Environmental Microbiology (ASM press) and the SRL Proteomics and Bioinformatics (SciRes Literature) journals.

STEC interactions and factors

Amrita Dosanjh is a Pediatric Pulmonologist in San Diego and a member of several editorial boards. She completed her training at Harvard, CHOP and UCSD School of Medicine. Her studies have included investigations of respiratory viruses using cellular and molecular techniques.

Respiratory diseases

Fernanda De Freitas Anibal had her PhD from University of São Paulo, Brazil in Basic and Applied Immunology. She is a Principal Investigator at Laboratory of Parasitology (Federal University of São Carlos) seeks new tools for the treatment, prevention and diagnostics for infectious diseases. Currently, they are working with two plants and six enzymes and their effects against schistosomiasis mansoni and toxocariasis, about the treatment of the infectious diseases, their group studies effects of plants (extracts) and their isolated fractions in order to evaluate the anti-parasitic and anti-inflammatory effects and for infectious disease prevention, moreover have been working on the evaluation of the proteins of the parasite that has been potential to induce immune responses that decrease the parasite burden.

Immune responses

Maria Paula Ramalho Bajanca-Lavado has completed her PhD in Biomedical Science, specialty Microbiology and is responsible for the Haemophilus influenzae Reference Laboratory, Department of Infectious Diseases, National Institute of Health in Lisbon, Portugal. She has published several scientific publications in peer-review journals, along with other scientific productions, including invited lectures, oral communications and posters presented in international conferences. Her research is focused at H. influenzae infections, in different clinical and epidemiological aspects.

H. influenzae infections

Stef Stienstra is a strategic and creative Consultant in Biomedical Science with a parallel career as a Commander of the Reserve of the Royal Dutch Navy. For the Dutch Armed Forces he has responsibility for the counter measures in CBNRe threats and (medical) consequence management both in a military and a civilian (terrorism) setting. In his civil career he works internationally as a Consultant or as Scientific Supervisory Board Member for several medical and biotech companies, merely involved in biodefense. He is also a Visiting Professor for Punjab University in Pakistan and Rhein-Waal University in Germany. He has completed his studies in Medicine and in Biochemistry at the University of Groningen in Netherlands and has extensive practical experience in cell biology, immuno-hematology, biodefense and transfusion medicine.

Ebola

Elias Tannous is an infection control professional with more than 20 years experience in the healthcare setting. He holds degree in Nursing from the French Ministry of Health and from Saint Joseph University in Lebanon, degrees in Business Administrations and Human Resource/Personnel Management from UK and Certified Board in Infection Control, USA since 2008. He has coordinated, co-directed and facilitated loads of IC educational activities and has been heavily involved in major infection control activities, projects and programs for the past 10 years, including commissioning of new facilities, developing surveillance programs and evaluating IC programs.

Infection control

Naim Deniz Ayaz is an Associate Professor of the Department of Food Hygiene and Technology at Kirikkale University, Faculty of Veterinary Medicine. He has received his PhD in Food Hygiene and Technology from the Ankara University in 2008. He is the Vice Dean and Executive Board Member of Kirikkale University, Faculty of Veterinary Medicine; an Expert of the Biosafety Clearing-House Mechanism of Turkey; a Research and Advisory Board Member of the National Red Meat Council and an Editorial Board Member of several scientific journals. His main research interests are food microbiology, characterization of food-borne pathogens, bacteriophages, biocontrol of pathogens and bacterial antibiotic resistance.

Food microbiology

Aziz Alami Chentoufi is a Consultant and Head of Immunology/Serology/HLA section at Pathology and Clinical Laboratory Medicine, King Fahad Medical City (KFMC). He is also an Assistant Professor of Immunology at Faculty of Medicine, King Saud Ibn AbdulAziz University. He is the Chairperson of Research Committee of PCLMA-KFMC. He is the Diplomate of the American Board of Medical laboratory Immunology D(ABMLI ), Fellow of the Association of Clinical Sciences (FACSc), accredited by the European Society of Translational Medicine (PCTM) and Fellow of the Academy of translational Medicine (FacadTM). He received his Ph.D. in Biomedical Sciences (Tolerance induction to xenogenic and allogenic antigens using monoclonal antibody anti-igM and anti-IgD) from the University Catholic of Louvain, Brussels, Belgium in 1999. He has done postdoctoral fellowship at McGill University, Montreal, Canada from 1999 to 2004 where he worked on immunogenetic of type 1 Diabetes and gene therapy for graft versus host disease then he was appointed as specialist at the University of California Irvine-Medical Center, Irvine, California, USA in 2006 where he was a key investigator in the development of mucosal vaccine against herpes simplex virus type 1 and 2. He is an independent Immunologist with a national and international reputation in vaccine development against both infectious and autoimmune diseases. He is well-integrated into the scientific community within the United States as well as Europe and Saudi Arabia and he is actively involved in a number of professional societies including American Society of Histocompatibility and Immunogenetic (ASHI), Association of Clinical Scientist, Canadian Society of Immunology and The Federation of Clinical Immunology Societies (FOCIS). He is PI and Co-PI in a number of research grant proposals and associate editor in many scientific journals and has more than 50 publications in high impact factor journals.

Cellular and molecular immunology

Junie Lia Monica is an MD, Ph D, Professor, Head Microbiology Department, "Iuliu Hatieganu" University of Medicine and Pharmacy, Cluj Napoca, Romania. She is a Coordinator of resident doctor’s in the Laboratory Medicine specialty and Leadership PhD doctor’s thesis in Medicine field. She is a Board Member of European professional Societies ESCMID (ESGCP Study Groups), Society of Chemotherapy, Scientia Parasitologica Pro Vita and is a Reviewer of international reviews, Member of International organizations, Director/Coordinator in research projects. She has more than 63 papers published in full in international journals and is an editorial board member of national reviews. She is an Organizer/President, Keynote, Invited Speaker and Chair of International and National Congresses.

Microbiology