Meet the experts
Dr Robert Pignolo
Professor of Geriatric Medicine,
Mayo Clinic, USA
Robert Pignolo, MD, PhD 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 Pignolo has worked on basic science, translational, and clinical aspects of bone diseases, including FOP and non-hereditary forms of heterotopic ossification (HO), for over 20 years – first at the University of Pennsylvania in Center for Research on FOP & Related Disorders in Philadelphia, and now at the Mayo Clinic in Rochester, Minnesota.
Major research areas related to FOP include rare bone disorders, natural history of FOP, drug discovery, non-hereditary HO, and repurposing of drugs for the treatment of FOP and similar conditions.
Dr Pignolo is currently the principal investigator on all interventional trials for FOP at the Mayo Clinic. He is actively involved in the FOP community worldwide and is currently president of the International Clinic Council on FOP, established in 2017 to help consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. Outside of FOP-related activities, his research focuses on basic, translational, and clinical aspects of conditions of aging and musculoskeletal disorders, with a focus on cellular senescence and accelerated tissue aging and disease.
He serves on the editorial boards for Aging Cell, Bone, and Mayo Clinic Proceedings.
Grants, research, and support for advisory boards and conferences: Clementia Pharmaceuticals/Ipsen, Alexion, BioMarin, Inventiva, Genzyme, and Regeneron.
Dr Geneviève Baujat
Clinical Geneticist Consultant,
Imagine Institute of Necker-Enfants Malades Hospital, Paris, France
Geneviève Baujat, pediatrician by training, is Clinical Geneticist Consultant in the Centre of Reference for Skeletal Dysplasia, at the Imagine Institute of Necker-Enfants Malades Hospital in Paris, France. She is also a member of the European Reference Network on Rare Bone Disorders and the International Clinical Council on Fibrodysplasia Ossificans Progressive (FOP). She has an active interest for skeletal dysplasia diagnosis (from antenatal period to adulthood) and pediatric management. She participates in several research projects through the Centre of Reference, including the development of databases and registries for better known epidemiology and natural history of skeletal conditions, and also takes part in clinical trials for emergent therapies, including FOP.
Grants, research and, support for advisory boards and conferences: Clementia Pharmaceuticals/Ipsen, Alexion, BioMarin, Inventiva, Genzyme, and Regeneron.
Dr Carmen L De Cunto
Head of Pediatric Rheumatology Section,
Hospital Italiano de Buenos Aires, Argentina
Carmen L De Cunto is Associate Professor of Pediatrics at Escuela de Medicina del Instituto Universitario at Hospital Italiano in Buenos Aires, Argentina. Here, she also works as a Pediatric Rheumatologist, and is Head of Pediatric Rheumatology Section in the Department of Pediatrics. Dr De Cunto is the Coordinator of the program “Transition from pediatrics to adult medicine” at the same hospital. For the last 20 years she has been taking care of children and young adults with fibrodysplasia ossificans progressive (FOP). Currently, she also works as a Consultant at Fundación FOP Argentina, and as a Referral Consultant for patients with FOP around Latin-America. Since 2016, she has been a member of the FOP International Clinical Council, where in 2019 she was named Co-Chair for the Clinical Trials Committee and since 2020 has also been the Chair for the Medical Advisory Board IFOPA Registry.
Grant/research support, honoraria, or consultation fees: Ipsen, PI in FOP protocols
Dr Clive Friedman
Pediatric Dentist; Assistant Clinical Professor in Pediatric Dentistry, University of Toronto, Canada
Clive Friedman is a Graduate of the University of Witwatersrand South Africa. He received his specialty in Pediatric Dentistry University of New Orleans, and has been in full time clinical practice since 1981. He is an Assistant Clinical Professor at the Schulich School of Medicine and Dentistry as well as the University of Toronto where he has taught an array of courses.
Dr Friedman is a Diplomate of the American Board of Pediatric Dentistry and Fellow ADPD (Academy Dentistry for Persons with Disability) . He was a past president of ADPD, and IADH (International Association of Disability and Oral Health), and a founding member of CSDH (Canadian Society of Disability and Oral Health). He currently sits on the editorial board of BSDH, is a member of the education committee for IADH, and a special consultant to Special Olympics. He is also a member of ICC (International Clinical Council for FOP) and consults globally for people with FOP. He has lectured extensively both nationally and internationally with specific interest in Special Needs, Risk Management, Behaviour and Motivational Interviewing.
Clive Friedman has received a grant from Ipsen Pharmaceuticals for a Canadian study on patients with FOP and received honoraria from Ipsen for consulting services related to FOP in Canada
Professor Richard Keen
Consultant in Metabolic Bone Disease,
Royal National Orthopaedic Hospital, London, UK
Richard Keen is a Consultant in Metabolic Bone Disease, working at the Royal National Orthopaedic Hospital in the UK. He trained in rheumatology, but for the last 20 years has specialized in the management of osteoporosis and rare metabolic bone diseases. Professor Keen leads a clinical research team and is the Principal Investigator for trials examining novel treatments for patients with fibrodysplasia ossificans progressive (FOP). He is also a member of the International Clinical Council on FOP.
• Advisory Boards: Ipsen, Regeneron
• Speaker Fees: Ipsen
• Research Support: Ipsen, Regeneron
Dr Mona Al Mukaddam
Assistant Professor of Clinical Medicine and Orthopaedic Surgery
University of Pennsylvania, Philadelphia, USA
Mona Al Mukaddam is an adult endocrinologist in the Division of Endocrinology, Diabetes and Metabolism at the Pennsylvania and Director, Penn Bone Center. Dr Al Mukaddam received her Bachelor of Science and Medical Degrees from American University in Beirut, Lebanon. She completed her internship and residency in internal medicine at the University of Iowa, a fellowship in the Division of Endocrinology, Diabetes and Metabolism at Penn, and received a Master of Science Degree in translational medicine and therapeutics at the University of Pennsylvania. Dr Al Mukaddam is board certified in internal medicine and endocrinology, diabetes and metabolism. She is the principal investigator on ongoing clinical trials in FOP at the Center for Research in FOP & Related Disorders at Penn and is a founding member of the International Clinical Council on FOP (ICC).
Mona Al Mukaddam receives/has received clinical trials research funding from Ipsen/Clementia Pharmaceuticals, Incyte and Regeneron Pharmaceuticals, and is a nonpaid consultant for BioCryst
• Women’s health and FOP
Dr Janieke van Nugteren
Specialist anaesthetist, Cape Town, South Africa
Janieke van Nugteren is a specialist anaesthetist working in private practice in Cape Town, South Africa. Up until September 2021 Dr van Nugteren was a Consultant Anaesthetist working in the Department of Anaesthesia and Perioperative Medicine at Groote Schuur Hospital, Cape Town. As a full-time clinical anaesthetist, she provides anaesthesia for Maxillo-Facial, General Surgery, Neurosurgery, Cardiac, Vascular, Orthopaedic, Obstetrics and Gynaecology, ENT and Ophthalmology lists. Dr van Nugteren has developed a special interest in FOP after having anaesthetised two patients with FOP, and attending an IFOPA meeting in Brazil in 2018.
Janieke van Nugteren has no financial interests to disclose.
Dr Christiaan Scott
Head of Pediatric Rheumatology at Red Cross War Memorial,
Associate Professor at University of Cape Town, South Africa
Chris Scott is Professor and former head of Paediatric Rheumatology at Red Cross War Memorial Children’s Hospital and the University of Cape Town. He is currently director of the Clinical Research Center at UCT. His research and educational focus are on the care of patients with rare and rheumatic diseases in Africa and other less resourced communities. Prof Scott has a special interest in access to care, Paediatric Vasculitis, SLE, Juvenile Idiopathic Arthritis and Fibrodysplasia Ossificans Progressiva. He is a former the chairman of the South African Arthritis Foundation and the co-chair of the Global Task Force for Musculoskeletal Health Task Force. He also serves on the Steering committee of the Paediatric Society of the African League of Associations for Rheumatology, the is Chairperson of International Clinical Council for FOP.
No disclosures to declare