PRESS RELEASE

FAIRFAX—On Wednesday, OrphanAnesthesia announced the online publication of Spanish-language translations of three previously published clinical recommendations, two of which were authored by world-renowned DC area plastic surgeon, Dr Craig R Dufresne, MD, FACS, FICFS. OrphanAnesthesia, which publishes recommendations for anesthesia management of patients with rare disorders, is a project of the Scientific Working Group of Pediatric Anesthesia of the German Society of Anesthesiology and Intensive Care Medicine and Orphanet, a French working group of the Institute National de la Santé et de la Recherche Médicale (INSERM) devoted to rare disease information dissemination.

The translations were for clinical practice recommendations Dufresne co-authored on distal arthrogryposis types 1 and distal arthrogryposis type 3 and describe the conditions, their diagnosis, typical surgeries patients undergo, special considerations before surgery, suggested anesthetic approach, potential complications, and monitoring and care after surgery.

The distal arthrogryposis recommendations grew out of Dufresne’s decade-long project on Freeman-Burian syndrome (FBS), a condition with which the distal arthrogryposis syndromes are often confused. Distal arthrogryposis types 1 and 3 are non-progressive muscular conditions that arise before birth and cause restricted movement of joints in the hands and feet. Distal arthrogryposis type 3 additionally includes birth defects of the face, notably cleft lip and palate. FBS, by contrast, is primarily a condition of facial and skull muscles that frequently involves muscles in the arms, legs, and elsewhere and is unique in many other ways.

Dufresne has written extensively about FBS and is considered to be one of the leading experts in the world on this exceptionally rare condition, having cared for affected patients since the mid-1980s and written the only FBS clinical recommendations. For Dufresne writing about rare conditions is all about educating people—scientists, physicians, care teams, family members, and patients—in order to improve patients’ chances for a healthy, normal, and productive life. An ever-humble gentleman, publishing medical articles is his way to help many more patients than he ever could directly.

For more information and to arrange interviews with Dr Dufresne and a patient who has this very rare syndrome, please contact the office.