PRESS RELEASE

FAIRFAX—After years of confronting out-dated and often harmful information about the very rare condition, Freeman-Burian syndrome (FBS)—previously, Freeman-Sheldon syndrome, the office of Dr Craig R Dufresne  announced that peer-reviewed medical journal versions of his preprints had been published. These articles have now been reviewed by editors at the journals and other experts, unlike preprints that are not critically evaluated and are intended for rapid dissemination of preliminary information. It’s Dufresne’s hope wider dissemination of accurate and up-to-date information will improve patient care.

This year has seen Dufresne publish two long-awaited articles: “Unsafe Care and Fake News in Freeman-Burian Syndrome” in January and “Strategies for Improving Case Reports Involving Patients With Rare Diseases” the following month, and last year, he published, “Comment on: Anesthetic Management of a Pediatric Patient with Freeman-Sheldon Syndrome Undergoing Atrial Septal Defect Closure: a Case Report“.

Back in 2022, Dufresne had four articles published: “Oculoplastic Surgery, Diagnosis, and Other Matters in Freeman-Burian Syndrome” in June; “Clarity on Diagnosis in Freeman-Burian Syndrome” and “Arthrogryposis and Diagnosis in Freeman‒Burian Syndrome” in October; and “Re: ‘Periocular Anomalies in Freeman-Sheldon Syndrome” in November.

Dufresne, a world-renowned rare disease specialist and DC area plastic surgeon, has decades of experience caring for patients and writing about FBS. FBS, an exceptionally rare and difficult to treat birth defect, is primarily a condition of facial and skull muscles that frequently involves muscles in the arms, legs, and elsewhere.

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