{"id":59003,"date":"2019-04-17T13:10:58","date_gmt":"2019-04-17T17:10:58","guid":{"rendered":"https:\/\/rarediseases.org\/the-2019-rare-neurological-disease-special-report-is-now-available\/"},"modified":"2019-04-17T13:10:58","modified_gmt":"2019-04-17T17:10:58","slug":"the-2019-rare-neurological-disease-special-report-is-now-available","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/the-2019-rare-neurological-disease-special-report-is-now-available\/","title":{"rendered":"The 2019 Rare Neurological Disease Special Report Is Now Available"},"content":{"rendered":"

This 5th<\/sup>\u00a0annual issue is the largest to date and focuses on the progress
\n<\/em><\/strong>in medical science, genetics, and neuromuscular diseases<\/em><\/strong><\/p>\n

Parsippany, NJ\u00a0<\/strong>\u2013 April 16, 2019 \u2013 Frontline Medical Communications (FMC) is pleased to announce the publication of the 2019\u00a0Neurology Reviews<\/em><\/strong>\u00a0Rare Neurological Disease Special Report<\/em><\/strong><\/a>.\u00a0<\/em><\/strong>Produced in collaboration with the National Organization for Rare Disorders (NORD), this 5th<\/sup>\u00a0annual issue is now available as a digital edition online, in print, and via the\u00a0Neurology Reviews<\/em><\/strong><\/a>\u00a0<\/em><\/strong>mobile app.<\/p>\n

Published each year to commemorate Rare Disease Day, the\u00a0Rare Neurological Disease Special Report<\/em><\/strong><\/a>\u00a0<\/em><\/strong>is a joint endeavor in which\u00a0Neurology Reviews<\/em><\/strong><\/a>\u00a0and\u00a0NORD<\/strong><\/a>\u00a0partner to keep the busy clinician abreast of the latest diagnostic tools and medical therapies available to manage and treat rare neurological medical conditions. With more than 7,000 rare diseases identified and more than half of the medical treatments approved by the FDA last year for rare diseases, health care professionals need easily accessible, reliable resources to stay informed \u2014the\u00a0Rare Neurological Disease Special Report<\/em><\/strong><\/a>\u00a0<\/em><\/strong>serves as a valued reference.<\/p>\n

Nearly a third of the 2019 issue focuses on the latest advances in clinical genetic testing, newborn screenings, and gene-based therapies. Information and resources on gene therapy are a particular focus; of note are the profile of the New York Genome Center and the Alliance for Regenerative Medicine\u2019s article on cell and gene therapy. Additional highlights include NORD\u2019s educational, research, and advocacy efforts; the pioneering work of the pharmaceutical industry and disease-state medical, genetic, and patient-focused associations and societies; the promising drug pipeline for rare neuromuscular diseases \u2013 spinal muscular atrophy, amyotrophic lateral sclerosis (ALS), Lambert-Eaton myasthenic syndrome (LEMS), Huntington\u2019s disease, Charcot-Marie-Tooth disease, and Duchenne muscular dystrophy; and NIH tools, registries, and educational materials.<\/p>\n

Elizabeth Katz, Publisher of\u00a0Neurology Reviews<\/em><\/strong><\/a>, has spearheaded the development of this key resource since inception. \u201cIt has been such a rewarding experience to bring together key stakeholders whose common goals are focused on helping patients with rare disease and their families find life-changing solutions,\u201d she said. In announcing the issuance, Ms. Katz also acknowledged the tireless efforts of the editorial team, led by Glenn Williams, VP, Group Editor. Ms. Katz and Mr. Williams also acknowledged the work of Ronald DeBellis, PharmD,\u00a0 the students of the Keck Graduate Institute who contributed articles, and the staff of NORD.<\/p>\n

Annual research on the\u00a0Rare Neurological Disease Special Report<\/em><\/strong><\/a>\u00a0<\/em><\/strong>confirms a high level of awareness and readership (84%); nearly all agree the quality of material is useful\/effective; and more than two-thirds strongly agree it broadens their understanding\u00a0 of certain rare diseases and the difficulties surrounding symptom identification, diagnosis, and family life.<\/p>\n

To learn more about the rare disease initiatives of\u00a0Neurology Reviews<\/em><\/strong><\/a>\u00a0and the NORD partnership, contact Elizabeth Katz at 973-224-7951 or\u00a0ekatz@mdedge.com<\/strong><\/a>. Details and information on all FMC\/MDedge digital brands, print publications, and custom solutions are available at\u00a0www.<\/strong>frontlinemedcom.com<\/strong><\/a>; visit weekly for the latest innovative programs and multimedia initiatives.<\/p>\n

###<\/p>\n

About\u00a0<\/u><\/strong>Neurology Reviews<\/em><\/strong><\/a>\u00a0and MDedge Neurology
\n<\/u><\/strong>Launched in 1993,\u00a0Neurology Reviews<\/em><\/strong><\/a>\u00ae is the first and original news source in neurology.\u00a0Neurology Reviews<\/em><\/strong><\/a>\u00ae has a 26-year history of providing independent, unbiased news to neurologists and clinicians interested in the neurosciences.\u00a0Neurology Reviews<\/em><\/strong><\/a>\u00ae covers medical conferences and clinical research findings, as well as specialty trends, expert opinions, and the breadth of influences affecting the practice of neurology. Experienced medical journalists deliver timely, relevant, and insightful news affecting the practice of neurology and all its subspecialties. In addition to the monthly print issue reaching nearly 25,000 neurologists and clinicians interested in neuroscience, the\u00a0Neurology Reviews<\/em><\/strong><\/a>\u00ae website\u00a0www.mdedge.com\/neurology<\/strong>, part of the MDedge\u2122 web portal, features online ahead of print conference reporting, audio and video interviews, disease-specific microsites, self-assessment quizzes, supplements, sponsored educational programs, a calendar of relevant medical meetings, and a career center listing job openings around the country.\u00a0Neurology Reviews<\/em><\/strong><\/a>\u00ae provides its content in print, through an App, on a mobile-friendly website, in digital editions, and through targeted e-blasts.<\/p>\n

About the\u00a0<\/u><\/strong>National Organization for Rare Disorders (NORD)<\/strong><\/a>\u00ae<\/u><\/strong>
\nThe\u00a0National Organization for Rare Disorders (NORD)<\/strong><\/a>\u00ae is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the more than 7, 000 rare diseases that affect 25 to 30 million Americans. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For 36 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most. NORD represents more than 280 disease-specific member organizations and collaborates globally to raise awareness around rare disease and advance access to treatments for our community.\u00a0www.rarediseases.org<\/strong><\/a>.<\/p>\n

About\u00a0Frontline Medical Communications<\/strong><\/a>
\nFrontline Medical Communications<\/a>\u00a0Inc. is one of the healthcare industry\u2019s largest medical communications companies and a leader in digital, print, and live events. The Company leads in HCP-level targeting and is ranked 1st<\/sup>\u00a0in combined web and print engagements. With\u00a0MDedge<\/strong><\/a>\u2122, our state-of-the-art integrated web portal, and audited email database, FMC meets the marketing challenges of our clients with superior reach, optimal sponsorship opportunities, and flexible advertising programs. We reach 1.2 million+ physicians, NPs, PAs, HCPs, and key healthcare decision makers through more than 30 media brands serving 20 distinct markets, who access our content through an array of digital, print, and face to face channels and social media platforms. FMC delivers award-winning, indexed, clinical reviews; practice and policy information; and medical news daily from on-site reporting at major medical meetings, many in collaboration with notable societies, medical associations, and opinion leaders. FMC produces live events, digital click-for-credit, and CME in affiliation with Global Academy for Medical Education, LLC (globalacademycme.com<\/a>) and Hemedicus (www.hemedicus.com<\/a>). Visit\u00a0frontlinemedcom.com<\/a>\u00a0|\u00a0Twitter<\/a>\u00a0|\u00a0Facebook<\/a>\u00a0|\u00a0LinkedIn<\/a>.<\/p>\n

Contact:<\/strong><\/p>\n

Elizabeth Katz<\/strong>, Publisher,\u00a0ekatz@mdedge.com<\/strong><\/a>,\u00a0<\/strong>973.224.7951<\/p>\n","protected":false},"excerpt":{"rendered":"

This 5th\u00a0annual issue is the largest to date and focuses on the progress in medical science, genetics, and neuromuscular diseases Parsippany, NJ\u00a0\u2013 April 16, 2019 \u2013 Frontline Medical Communications (FMC) … <\/p>\n

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