The original post can be found here. The 4th Annual Edition is now available.
Parsippany – March 26, 2018 – The 2018 Rare Neurological Disease Special Report has been published by Neurology Reviews in collaboration with NORD, the National Organization for Rare Disorders, the leading independent nonprofit representing the 30 million Americans with rare diseases.
Neurology Reviews is pleased to provide the most current information and news about rare neurological diseases. The 4th annual edition of the Rare Neurological Disease Special Report, the largest to date, exemplifies the ongoing needs of healthcare professionals for more clinical resources to aid in the diagnosis, treatment and management of patients with rare neurological disorders.
The 2018 Special Report features a stellar lineup of key opinion leaders and authors and provides a broad review of pending or newly approved therapies for epileptic encephalopathies, rare neuromuscular and neurodegenerative diseases, Batten disease, lipidosis, Lennox-Gastaut, Dravet and Hurler syndromes, myasthenia gravis; successes of genetic testing and gene therapies, and the need for a ‘rare’ distinction in specialty pharmacy is also presented. Dr. Bernard Maria, recipient of the 2018 Child Neurology Society Hower Award, highlights the impact of the ‘Neurobiology of Disease in Children’ symposia, a result of continuous NIH grants since 2001. Dr. Marshall Summar notes the challenging but important work being done at the first Center of Excellence at the Children’s National Rare Disease Institute. NORD’s federal policy outlook for 2018 is also elucidated.
Elizabeth Katz, Publisher of Neurology Reviews and the NORD partnership liaison, said, “Through the support of numerous medical societies, academic institutions, patient advocacy groups, and pharmaceutical sponsors, healthcare professionals now have access to the latest clinical developments featured in these special issues.”
She continued, “I am grateful for the efforts of the editorial staff, led by Glenn Williams, VP/Group Editor, NORD, the Keck Graduate Institute, and many esteemed contributors, year after year, which expands the essential support needed by patients and caregivers of those affected by rare diseases.”
To learn more about the rare disease initiatives of Neurology Reviews and the NORD partnership, contact Elizabeth Katz at 973-224-7951 or [email protected]. Details and information on all FMC/MDedge digital brands, print publications, and custom programs are available at www.frontlinemedcom.com; visit weekly for the latest innovative programs and multimedia initiatives.
About Neurology Reviews®
Neurology Reviews celebrates its 25th anniversary! Launched in 1993, Neurology Reviews is the first and original news source in neurology and has a history of providing independent, unbiased news to neurologists and clinicians interested in the neurosciences. Neurology Reviews 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 over 25,000 neurologists and clinicians interested in neuroscience, the Neurology Reviews website, www.mdedge.com/neurologyreviews, features online ahead of print conference reporting, audio and video interviews, disease-specific microsites, self-assessment quizzes, patient handouts, supplements, sponsored educational programs, a calendar of relevant medical meetings, and, a career center listing job openings around the country. Neurology Reviews provides its content in print, through an App, on a mobile-friendly website, in digital editions, and through targeted e-blasts.
About the National Organization for Rare Disorders (NORD)® The National Organization for Rare Disorders (NORD)® 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 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. 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 35 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 250 disease-specific member organizations and collaborates with many other organizations in specific causes of importance to the rare disease patient
community. www.rarediseases.org.
About Frontline Medical Communications
Frontline Medical Communications Inc. is one of the healthcare industry’s largest medical communications companies and a leader in digital, print, and live events. The Company leads in HCP-level targeting and is ranked 1st in combined web and print engagements. With MDedge™, 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 1.3 million+ physicians, NPs, PAs, HCPs, and key healthcare decision makers through more than 35 media brands serving 25 distinct markets. Print reach surpasses 850,000 and extends digitally, giving providers immediate content access through interactive websites, newsletters, mobile apps, digital editions, 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 through affiliation with Global Academy for Medical Education, LLC (globalacademycme.com) and Hemedicus (www.hemedicus.com).
Contacts:
Elizabeth Katz, Publisher, Neurology Reviews®, 973-224-7951 (mobile), [email protected]
Laura Mullen, Associate Director, Communications and PR, NORD, 203-304-7258, [email protected]
Frontline Medical Communications
Corporate office: 7 Century Drive, Suite 302 55 Kenosia Avenue
Parsippany, NJ 07054-4609|Main: 973.206.3434|Fax: 973.206.9378
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General Email: [email protected]
National Organization for Rare Disorders
55 Kenosia Avenue
Danbury, CT 06810
Office: 203.744.0100
It’s great to finally learn about my cmt!
I am an 81 yr. old male who was diagnosed with CMT about 10-12 yrs. ago and has worn leg braces ever since. They no doubt help, however, in the last couple of years my legs have gotten considerably weaker, especially the last year. I exercise faithfully every day, but it doesn’t seem to help.I have been an outdoors person all my life but have had to give up on most all activities . The mind is still good but the legs won’t perform. Is there any medical treatment or perhaps a clinical trial experiment I can volunteer for? Thank you.