Meet the experts

Program director

Dr. Robert Pignolo,
Mayo Clinic, USA

Dr. Robert J. 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.

He 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.

He 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.

Principal investigator on clinical trials and consultant for Clementia Pharmaceuticals/Ipsen and Regeneron Pharmaceutical

Dr. Genevieve Baujat
Clinical Geneticist Consultant,
Imagine Institute of Necker-Enfants Malades Hospital, Paris, France

Genevieve 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 supports for advisory boards and conferences: Clementia Pharmaceuticals/Ipsen, Alexion, BioMarin, Inventiva, Genzyme and Regeneron.

Dr. Carmen L. De Cunto MD
Head Pediatric Rheumatolgy Section,
Hospital Italiano de Buenos Aires, Argentina

Dr. 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 is a member of the FOP International Clinical Council, where in 2019 she was named Co-Chair for the Clinical Trials Committee and since 2020 is also chair for the Medical Advisory Board IFOPA Registry.

Grant/research support, honoraria or consulation fees: Ipsen, PI in FOP protocols

Professor Richard Keen
Consultant in Metabolic Bone Disease
Royal National Orthopaedic Hospital, London, UK

Professor 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, Regenerson

Dr. Chris Scott
Head of Pediatric Rheumatology at Red Cross War Memorial
Associate Professor at University of Cape Town, South Africa

Dr. Scott is Associate Professor and Head of Pediatric Rheumatology at Red Cross War Memorial Children’s Hospital and the University of Cape Town. His research and educational focus is on the care of patients with rare and rheumatic diseases in Africa and other less resourced communities. Dr. Scott has a special interest in access to care, pediatric systemic lupus erythematosus, juvenile idiopathic arthritis and fibrodysplasia ossificans progressive (FOP). He is a former Chairman of the South African Arthritis Foundation and the Co-chair of the Global Task Force for Musculoskeletal Health. He also serves on the Steering Committee of the Paediatric Society of the African League of Associations for Rheumatology, the International Clinical Council on FOP, and the International Presidents Council for IFOPA.

No disclosures to declare