Rare Disease Report

Top 10 Rare Disease Interviews of 2015

DECEMBER 17, 2015
RDR Staff
This year, we had numerous interviews with advocates and doctors in the rare disease community. Each interview had a unique story and we are so thankful that we have a platform to help spread awareness of those rare conditions. 

And while trying to determine which interviews were our favorite is like asking a parent to name their favorite child, there were some interviews that were more popular than others over the course of the year. Below are the top 10 interviews for 2015 based on the number of page views generated.


Scott Newsome, DO, Department of Neurology at Johns Hopkins Medical describes stiff person syndrome, a rare neurological condition that often takes several years to be properly diagnosed. 


Scott Newsome goes on to describe the treatment options - both pharmacologic and non-pharmacologic - for people with stiff person syndrome.


Kenneth Fischbeck, MD, of the National Institute of Neurological Disorders and Stroke (NINDS) talks about the recent studies being conducted at the NINDS, in collaboration with Novartis, to find a treatment for Kennedy's disease. 


Scott Newsome talks about the psychology of stiff person syndrome as well as the additional stressor that a patient with stiff person syndrome may be more susceptible to cancer. 


Tray Brandt, PhD of GeneDx talks about the genetic tests available for peripheral neuropathies, including Charcot-Tooth-Marie syndrome. 


Jeffrey W. Olin, DO, FACC, FAHA, professor of Medicine at Icahn School of Medicine at Mount Sinai talks about fibromuscular Dysplasia (FMD) and some of the early signs and symptoms commonly seen in this condition.


Michael Levy, MD, Department of Neurology at Johns Hopkins Medicine talks about neuromyelitis optica - a rare autoimmune condition often misdiagnosed initially as multiple sclerosis.


Swati Sathe, MD, of Rutgers New Jersey Medical School summarizes the natural history and pathophysiology of cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy (CADASIL), a rare neurological condition.


Eric Hoffman, PhD, president and chief executive officer of Reveragen Biopharma provides an update on the phase 1 and 2 studies underway or planned for the use of VPM15 as a treatment option for patients with Duchenne muscular dystrophy. 


Following the unexplained death of her daughter, Laura Crandall set out to raise awareness of sudden unexplained death in children. In this video, Laura explains the rare phenomenon and the limited data that is currently available.

To see more of our videos, be sure to check out our youtube channel.

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