Mar. 27, 2017
Posted by Jennifer Huron
As part of its efforts to educate medical professionals about rare diseases, NORD, the leading independent nonprofit representing the 30 million Americans with rare diseases, is pleased to announce publication of the 3rd annual Rare Neurological Disease Special Report™, with Neurology Reviews®, a Frontline Medical Communications (FMC) print and digital media publication.
Published as a supplement to the March issue of Neurology Reviews®, the 2017 Rare Neurological Disease Special Report™ is the most extensive to date. VP/Group Editor Glenn Williams highlighted this year’s coverage, which includes cannabinoids’ efficacy in rare pediatric epilepsies, new and potential therapies for neuromuscular disorders, and the clinical therapeutic potential of gene therapy; and, he acknowledged contributions from the Keck Graduate Institute, the Child Neurology Foundation, and the LGS Foundation (Lennox-Gastaut Syndrome). In addition, the Hereditary Neuropathy Foundation presented results from the inaugural Patient-Centered Charcot-Marie-Tooth (CMT) Summit, emphasizing the importance of patient-reported outcomes data, patient registries/networks, and underscoring the barriers to proper diagnosis, disease management, and treatment options, including gaps in standards of care guidelines.
The report also features an interview with Ronald J. DeBillis, PharmD, Chief Scientific Officer at NORD, on the topic of telemedicine and its benefits for patients, providers and health care institutions.
Learn about NORD’s other resources for medical professionals here.