Telemedicine for FSHD

Telemedicine for FSHD is an idea whose time has come! If people with FSHD are rare, doctors who understand FSHD are rarer still. Patients who don’t have the time or resources to travel long distances may never have the opportunity to receive state-of-the art medical care for their condition. That is about to change. One of the silver linings from social distancing during the COVID-19 crisis is the swift and broad embrace of telemedicine by the healthcare sector.

The doctors who lead the FSHD Clinical Trial Research Network (CTRN) have been at the forefront of this change. In our recent webinar, Dr. Jeffrey Statland, co-director of the CTRN, mentioned that he is offering telemedicine consults. In follow up, the FSHD Society worked with Kiley Higgs at the CTRN to compile a list (see below) of the CTRN sites and others that are offering telemedicine, along with contact information for scheduling an appointment. We will be updating this list:

Institution	Clinic Director	Phone	Fax	Email
University of Washington	Leo Wang, MD	n/a	n/a	n/a
UCLA	Perry Shieh, MD	unknown	unknown	unknown
University of Utah	Russell Butterfield, MD	(801) 585-7575
University of Kansas	Jeffrey Statland, MD	(913) 588-6820
The Ohio State University	Samantha LoRusso, MD	(614) 293-4969	(614) 293-6111
University of Rochester	Rabi Tawil, MD	(585) 273-2743	(585) 273-1255
Kennedy Krieger Inst.	Doris Leung, MD PhD, Julie S. Cohen, genetic counselor, et al.			lasseth@kennedykrieger.org Make appointment online
Virginia Commonwealth University	Nick Johnson, MD, Chelsea Chambers, MS LCGC	(804) 482-1260		Chelsea.Chambers@vcuhealth.org
University of Massachusetts Medical School	Larry Hayward, MD PhD	(508) 334-2527