neurology reviews

Neurology Reviews® & NORD Publish 2018 Rare Neurological Disease Special Report

by | Apr 2, 2018 | 2 comments

neurology reviews

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 REVIEWSNeurology 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.

NORDElizabeth 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; 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,, 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


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 ( and Hemedicus (


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 | Office: 203.744.0100

General Email: [email protected]

National Organization for Rare Disorders

55 Kenosia Avenue

Danbury, CT 06810

Office: 203.744.0100

Learn more on this topic

Related Blog Posts

Sneak Peak of Fall Newsletter: CMT Research Study Survey

My name is Elizabeth Francisco and I am a graduate student from the Genetic Counseling program at the University of North Carolina Greensboro. I am inviting you to participate in a research study. The goal of my study is to learn more about the experiences of people with Charcot-Marie-Tooth (CMT) with genetic counseling and genetic testing. Adults with CMT and parents or legal guardians of someone of any age who has a diagnosis of CMT are eligible to participate

Building Awareness on CMT and Supporting the Patient Community – HNF Announces Support from Pharnext

HNFpharnext recently entered into a partnership with the French biopharmaceutical company, Pharnext, to help raise awareness of Charcot-Marie-Tooth (CMT) disease and support the CMT patient community through several initiatives. Building awareness is key! Pharnext’s support will assist HNF in distributing HNF’s CMT Update quarterly newsletter, enhancing the Global Registry for Inherited Neuropathies (GRIN), setting up activities for CMT September Awareness Month in the US and strengthening the CMT Inspire Community.

Quality of Life and CMT Research

Did you know that 95% of clinical trials fail? There are multiple causes, most related to efficacy or safety, which obviously can be harmful and risky for patients. The risk-reward of enrolling in trials is a judgment call based on the devastating effects of disease related to quality of life (QoL) or life-threatening disease. With CMT, the risk-reward is more of a challenging question for many, as CMT in most cases is non-fatal.

Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.

Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.

Hot off the press

It seems like almost weekly there is another new publication on CMT with interesting basic biology. While an earlier “Hot off the press” highlighted the work of Cherry and co-workers at the University of Texas Southwestern Medical Center who showed show that neurons lacking a gene for rab7 result in neuropathy.

New Study on CMT Type 2B

If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.

Allison Moore is going to be published!

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

Join the conversation

Leave a Comment


  1. Sherri nantz

    It’s great to finally learn about my cmt!

  2. Andrew Korosec

    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.


Submit a Comment

Your email address will not be published. Required fields are marked *


Join for notifications on events, campaigns, & news