Symptomatic: The Symptom-based Handbook for Ehlers-danlos Syndromes and Hypermobility Spectrum Disorders

Clair Francomano received her M.D. degree from Johns Hopkins University School of Medicine and completed her training in Internal Medicine and Medical Genetics at Johns Hopkins. She served on the full-time faculty at Johns Hopkins, and then as Clinical Director for the National Human Genome Research Institute at the National Institutes of Health, where she was also Chief of the Medical Genetics Branch and directed the residency program in Medical Genetics. Subsequently, she became Director of Adult Genetics at the Harvey Institute for Human Genetics in Baltimore. In 2019, she became Professor of Medical and Molecular Genetics and Director of the Residency Training Program in Medical Genetics at Indiana University School of Medicine. Dr. Francomano has been involved in the care of patients with Ehlers-Danlos syndrome and other Heritable Disorders of Connective Tissue throughout her career. She served on the Professional Advisory Board for the Marfan Foundation and is a long-standing member of the Medical Advisory Board for the Little People of America. She has been a member of the Medical and Scientific Board of the Ehlers-Danlos Society since 2016 and is currently Chair of that Board. From 2021-22, Dr. Francomano was a member of the Committee on Selected Heritable Connective Tissue Disorders and Disability for the National Academies of Science, Engineering and Medicine. She serves on the Steering Committee for the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders.

Alan Hakim received his bachelor’s and master’s degrees in medical sciences from Cambridge University and completed his training in Internal Medicine at Addenbrooke’s Hospital, Cambridge, and Rheumatology training at University College London Hospitals (UCLH), London UK. He received his consultant certification and fellowship from the Royal College of Physicians, UK in 2000 and 2005, respectively, and gained postgraduate certification in Translational Medicine from Edinburgh University in 2011. As a senior researcher, consultant, and clinical director he has practiced at Guy’s and Thomas’ Hospital, and Whipps Cross Hospital and Barts Health NHS Trust, London. He currently practices at The Harley Street Clinic, HCA Healthcare UK and is an honorary consultant in research at UCLH, London. He is also an Adjunct Associate Professor in Medicine, The School of Medicine, Hershey, Penn State, USA. Publishing widely in research and education, Dr. Hakim has co-authored and edited five other medical books and contributed many chapters and articles to major textbooks and online resources in Rheumatology and Internal Medicine. With several decades’ commitment to charitable organizations, most recently his focus has been support of the Ehlers-Danlos Society as their Chief Medical Officer, Director of Education and Director of Research, and Lead for their EDS ECHO portfolio. As a member of the International Consortium on the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders, he sits on the consortium Steering Committee and has chaired its Working Group on Hypermobile EDS/HSD since 2018.

Lansdale Henderson earned his bachelor’s degree with distinction in neuroscience as an Echols Scholar at the University of Virginia. He studied adult neurogenesis in laboratories at the University of Virginia School of Medicine, the National Institutes of Health, and the Pasteur Institute, co-authoring publications in the Journal of Neuroscience and elsewhere. He engaged with health and science policy as a John Jay Fellow for two U.S. Senators and subsequently staffed the Maryland Senate President. He earned honors for his thesis in political philosophy at St. John’s College Graduate Institute, and a second master’s degree from the Johns Hopkins School of Advanced International Studies (SAIS), including coursework as the Longvue Fellow at the Paris School of International Affairs (Sciences Po). Since 2020, he has co-founded two pre-clinical biotech startups while serving as Director of Research for The Metropolitan Neurosurgery Group.

Fraser Henderson, Sr. earned his degree in medicine at the University of Virginia. During his tour with the United States Navy, he was decorated for treatment of mass casualties during the 1983 Beirut terrorist bombings. He completed his residency as Chief Resident at the Medical University of South Carolina, then served as Director of Neurosurgery at the Veterans Medical Center in Charleston, South Carolina, before returning to active duty as Director of Neurosurgery of the Craniocervical Junction and Spine at the National Naval Medical Center, Bethesda. He deployed as Neurosurgeon to the 4th Marine Expeditionary Brigade during the Desert Shield/Desert Storm campaigns of the First Gulf War (1990-91). Commander Henderson was then the International Fellow for Craniospinal Surgery at The National Hospitals for Neurology and Neurosurgery, Queen Square, London. Recruited to Georgetown University as Director of Neurosurgery of the Craniocervical Junction and Spine, he later served as Co-Director of Neuro-Oncology, and was promoted to Professor of Neurosurgery and Associate Professor of Radiation Medicine in 2005. Entering private practice in 2008, he became Director of The Metropolitan Neurosurgery Group and Chief of Neurosurgery at Doctor’s Community Hospital. He is now Adjunct Clinical Professor of Neurosurgery at the University of Maryland Capital Region Medical Center. He serves on both the Executive Committee of the Bobby Jones Chiari Syringomyelia Foundation and the Medical and Scientific Board of The Ehlers-Danlos Society. He has published extensively on neurological and spinal disorders, co-edited four books regarding the craniocervical junction and Ehlers-Danlos syndromes, and he has hosted numerous conferences to promote understanding of these issues.