Asoc. Internacional FOP
Executive Director -International FOP Association
Michelle joined the IFOPA as Executive Director in February 2016. The majority of her career has been spent working for charities in the United States; seven years of which were spent leading a charity where she provided training and consulting to staff, boards of directors, and volunteers. In that role, Michelle was exposed to many deserving causes, but her passion has always been in working with patient advocacy organiztions, including the National Kidney Foundation and Polycystic Kidney Disease (PKD) Foundation. While at the PKD Foundation, Michelle became acquainted with the rare disease community which is part of what drew her to the IFOPA. At the PKD Foundation, Michelle served in the role of Chief Development Officer where she worked in all aspects of fundraising and maintained the organization’s relationships with pharmaceutical companies. Michelle also led the organization’s education and advocacy initiatives, including organizing patients for an FDA Advisory Committee meeting for the review of the first-ever drug treatment for PKD. At the IFOPA, Michelle is partnering with the Board of Directors to develop the organization’s strategic plan and corresponding fundraising, marketing and communications, and advocacy and awareness plans. She is also leading the development of family programs and services to better serve and connect the FOP community. Michelle is based in Kansas City, MO.
Dra. Carmen L. De Cunto
Jefa Sección Reumatología Pediátrica Servicio Clínica Pediátrica
Departamento de Pediatría Hospital Italiano de Buenos Aires
Clarissa Desjardins, Ph.D.
Fundador y CEO de Clementia Pharmaceuticals Inc.
Founder and CEO of Clementia Pharmaceuticals Inc.
Dr. Desjardins holds a Ph.D. in Neurology and Neurosurgery from McGill’s Faculty of Medicine and is the founder and CEO of Clementia Pharmaceuticals Inc. Clementia is a clinical stage biopharmaceutical company committed to delivering treatments to people who have none. The company is developing its lead candidate, palovarotene, to treat fibrodysplasia ossificans progressiva, multiple osteochondromas and other diseases. Formerly she was the CEO of the Centre of Excellence in Personalized Medicine. She also previously founded Advanced Bioconcept and co-founded Caprion Pharmaceuticals Inc., a biotechnology company focused on proteomic biomarker discovery and drug development. Dr. Desjardins received the BRIO award for outstanding contributions to the biotechnology industry from the Quebec Biotechnology Association and has sat of several Boards including most recently, Genome Canada and the SAB of the Canadian Council of Academies.
Aris N. Economides, Ph.D.
VP Investigación; Tecnologías de Ingeniería Genómica y Enfermedades del Esqueleto TFA Co-fundador y Jefe de Modelación Funcional; Centro de Genética Regeneron Regeneron Pharmaceuticals, Inc.
VP – Research; Genome Engineering Technologies, and Skeletal Diseases TFA
Co-founder & Head of Functional Modeling; Regeneron Genetics Center – Regeneron Pharmaceuticals, Inc.
Dr. Aris N. Economides currently holds the position of Vice President, leading two groups: Genome Engineering Technologies, and Skeletal Diseases Therapeutic Focus Area. In addition, he is a co-founder of Regeneron Genetics Center (RGC), where he is also Head of Functional Modeling. Among his research interests is drug development in FOP. Recently, he and his team discovered a novel mechanism that explains important aspects of FOP’s pathophysiology and pinpoints a new potential route to therapy.
Clive S Friedman BDS
Pediatría de Salud Bucal y Odontología London, Ontario
Pediatric Oral Health and Dentistry – London Ontario
Dr. Friedman is a pediatric dentist in full time private practice – affiliated with both the University of Toronto and Schuilch School of Medicine and Dentistrty. He has been the past president of both the IADH ( international association of disability and oral health ) as well as the ADPD. ( Academy of dentistry for persons with disability) he has spoken at numerous FOP conferences and consults dentists world wide with respect to ongoing treatment and management.
Zvi Grunwald, M.D.
Profesor y Director James D. Wentzler
Departamento de Anestesiología
Profesor de Pediatría Sidney Kimmel
Facultad de Medicina Universidad Thomas Jefferson y Hospitales
The James D. Wentzler Professor and Chair – Department of Anesthesiology Professor of Pediatrics – Sidney Kimmel Medical College- Thomas Jefferson University and Hospitals
Professor Zvi Grunwald is the James D. Wentzler Professor and Chairman, Department of Anesthesiology, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania. He is an internationally recognized expert in the perioperative management of patients affected with Fibrodysplasia Ossificans Progressiva (FOP) and established a multidisciplinary center to care for these patients at the Thomas Jefferson University Hospital in Philadelphia.
Vicepresidente, Gerente General de Europa, Oriente Medio y África. También es responsable de las relaciones con la comunidad internacional de FOP a nivel mundial. Clementia Pharmaceuticals
Vice-President, General Manager Europe, Middle-East & Africa. She is also responsible for FOP community relations at worldwide level.Clementia Pharmaceuticals
Stéphanie Hoffmann is the Vice-President, General Manager Europe, Middle-East & Africa. She is also responsible for FOP community relations at worldwide level. Stéphanie lives in Belgium. She has a scientific and business background. Stéphanie has been working for over 18 years in the field of rare diseases and orphan drug development around the world. She has led the launch of 2 orphan drugs in Europe when she was working at Genzyme. She has also recently coordinated the pre-commercial development program for an orphan drug designed to treat patients suffering from another rare bone condition. Stéphanie has developed expertise with regards to collaboration between industry and patient communities – this in full respect of ethical principles and with a genuine intention of caring for the patients as well as their families. It is in this spirit that she has designed and is implementing the ‘FOP Patient Narrative Project’.
Frederick S. Kaplan, M.D.
Isaac & Rose Nassau Profesor de Medicina Molecular Ortopédica; Co-Director, Centro de Investigación en FOP y Trastornos Relacionados Perelman Escuela de Medicina, Universidad de Pensilvania
No me es posible sintetizar en forma breve mis 30 años de trabajo con esta increíble comunidad!
I can’t think of how to summarize my 30 years of involvement with this incredible community – in one sentence
Robert Pignolo, M.D., Ph.D.
Director División de Medicina Geriátrica y Gerontología
Profesor de Medicina Geriátrica Robert y Arlene Kogod
Facultad de Medicina Clínica Mayo
Dr. Robert Pignolo is the Robert and Arlene Kogod Professor of Geriatric Medicine and Chair of Geriatric Medicine and Gerontology at the Mayo Clinic College Of Medicine
Dr. Robert Pignolo is the Robert and Arlene Kogod Professor of Geriatric Medicine and Chair of Geriatric Medicine and Gerontology at the Mayo Clinic College Of Medicine. He has worked on basic science, translational, and clinical aspects of FOP for over 15 years, first at the University of Pennsylvania Center for Research on FOP & Related Disorders in Philadelphia, and now at the Mayo Clinic in Rochester, Minnesota. Major research areas include the natural history of FOP, drug discovery, and repurposing of drugs for the treatment of FOP. He is currently the principal investigator of the palovarotene interventional trial at the Mayo Clinic.
Xiaobing Qian, M.D., Ph.D.
Director Ejecutivo Desarrollo Clínico Temprano y Ciencias Experimentales en Regeneron Pharmaceuticals Inc., Tarrytown, NY
Executive Director Early Clinical Development and Experimental Sciences at Regeneron Pharmaceuticals INC, Tarrytown, NY Dr. Xiaobing Qian obtained her medical training in Beijing, China at Beijing Medical University (now Peking University Health Science Center), and her PhD from University of Illinois Chicago Medical Center.
Dr. Qian has more than 19 years of experience in drug discovery and development across a broad spectrum of therapeutic areas including hematology, lipid metabolism, cardiovascular diseases, oncology, autoimmune and inflammatory diseases, pain, and muscle and bone diseases. She has led preclinical and clinical research and development teams to advance small molecules, biologics, and gene therapy drug candidates from target validation through early clinical development in common and rare diseases. Dr. Qian has been with Regeneron since 2007. In addition to her role as a Medical Director, she also led a Translational Medicine Strategy Group, an internal “think tank”, to research scientific and medical rationale and clinical research strategy to accelerate the development of innovative drug candidates created at Regeneron Laboratories into transformative medicines to meet high unmet need in patients. Her current work focuses on clinical development in fibrodysplasia ossificans progressiva (FOP).
Eileen M. Shore, Ph.D.
Profesora del Departamentos de Cirugía Ortopédica y Genética Cali / Weldon
Profesora de Investigación en FOP
Co-Director, Centro de FOP y Trastornos Relacionados
Escuela de Medicina Perelman de la Universidad de Pennsylvania
Professor, Departments of Orthopaedic Surgery and Genetics Cali/Weldon Professor of FOP Research Co-Director, Center for FOP and Related Disorders Perelman School of Medicine at the University of Pennsylvania
Dr. Eileen M. Shore received a B.Sc. from the University of Notre Dame, a M.A. degree in Biology from Indiana University, and her Ph.D. in Cell and Molecular Biology from the University of Pennsylvania. Following postdoctoral studies in cell biology at the Fox Chase Cancer Center, she returned to the University of Pennsylvania and now holds the inaugural Cali/Weldon endowed chair and, with Dr. Fred Kaplan, is the co-Director of the Center for Research in FOP and Related Disorders. In order to identify treatment targets and strategies for fibrodysplasia ossificans progressiva (FOP), Dr. Shore’s research investigates multiple aspects of the cellular and molecular mechanisms that promote the dysregulated bone formation that causes heterotopic ossification in FOP.
Paul B. Yu, M.D., Ph.D., F.A.H.A.
Profesor Asociado de Medicina
Facultad de Medicina de Harvard División de Medicina Cardiovascular
Hospital Brigham y de la Mujer
Associate Professor of Medicine
Harvard Medical School Division of Cardiovascular Medicine
Brigham and Women’s Hospital
Dr. Yu completed his A.B. in Philosophy and a B.S. in Biological Sciences at Stanford University, M.D. and Ph.D. (Immunology) degrees at Duke University, followed by Internal Medicine residency training at the University of California at San Francisco, and clinical fellowship in Cardiovascular Disease at Massachusetts General Hospital. Dr. Yu is board certified in Cardiovascular Medicine. Dr. Yu’s laboratory studies the function of bone morphogenetic protein (BMP) signaling in vascular development, disease and remodeling. We have developed novel reagents for modulating BMP signaling, and have employed these reagents to explore physiologic and pathophysiologic functions of BMP signaling in human disease, focusing on heterotopic ossification and fibrodysplasia ossificans progressiva, pulmonary arterial hypertension, and vascular calcification. A major goal of our work is to discern how BMP/TGF-β signaling achieves spatio-temporal and functional specificity, and how this pathway modulates tissue-specific consequences of inflammation and injury. www.vasculomorph.net/members/yu.