Rare Disease Day: Expert Interviews on Rare Neurological Diseases


A group of experts in the care of patients with rare diseases—James F. Howard, MD; Sabrina Paganoni, MD, PhD; Darcy Kruger, MD, PhD; Veronica Hood, PhD; and Bruce Cree, MD, PhD—shared their perspectives on hot topics of treatment and management.

In recent months, the NeurologyLive® staff has spoken to a variety of experts in the clinical care and management of patients with a number of rare neurological diseases, including Dravet syndrome, generalized myasthenia gravis (gMG), neuromyelitis optica spectrum disorder (NMOSD), Lennox-Gastaut syndrome (LGS), amyotrophic lateral sclerosis (ALS), and more.

In celebration of Rare Disease Day, NeurologyLive® compiled a number of these interviews with experts to offer an overview of the state of care and discussions on the hottest topics in these diseases. Those featured include:

  • Sabrina Paganoni, MD, PhD, investigator, Healey & AMG Center for ALS, Massachusetts General, and member, Executive Committee of Northeast ALS Consortium
  • Darcy Krueger, MD, PhD, director, Tuberous Sclerosis Clinic, Cincinnati Children’s
  • Bruce Cree, MD, PhD, MAS, FAAN, clinical research director of the UCSF Multiple Sclerosis Center, and professor of clinical neurology, UCSF Weill Institute for Neurosciences
  • Veronica Hood, PhD, MS, scientific director, Dravet Syndrome Foundation
  • James F. Howard, MD, Distinguished Professor of Neuromuscular Disease, University of North Carolina School of Medicine

For more coverage of rare neurological disorders and diseases, check out the NeurologyLive neuromuscular clinical focus page and epilepsy clinical focus page.

Click through the slides below to check out each expert interview:


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