Apr. 2, 2020
Posted by Laura Mullen
Parsipanny, NJ – Frontline Medical Communications (FMC) and the National Organization for Rare Disorders (NORD)® this week announced the release of the 6th annual Rare Neurological Disease Special Report. As the largest Rare Neurological Disease Special Report published to-date, this year’s issue features a unifying theme of the critical nature of multi-national, real-time collaboration that bolsters the burgeoning diagnostics, treatment, and patient advocacy advances within the universe of rare diseases.
Several key articles focus on the value of crowdsourcing, consortia, and patient registries in laying the foundation for clinical trials, while myriad media platforms, such as Netflix’s docu-series “Diagnosis,” add to the general knowledge base and connect patients to experts and forge social support systems.
The search for biomarkers and clinical phenotyping to differentiate disorder subtypes in mitochondrial diseases and amyotrophic lateral sclerosis (ALS) is further emphasized in the NIH’s Rare Disease Clinical Research Network (RDCRN) summary. Now in its fourth 5-year funding cycle, the RDCRN provides insight to gains made and future goals of its member consortia.
NORD and FMC were instrumental in conducting knowledge gap surveys this past year that underscore the vital responsibility this publication and larger networking have in disseminating clinically sound evidence to practitioners. One survey highlighted in the issue found that most physicians are self-educating on the topic of cannabis and cannabinoids rather than receiving formal training, while another survey identified areas where education and awareness about rare diseases can be improved in certain subspecialties.
Peter Saltonstall, president and CEO of NORD, said, “Sharing information about new discoveries and treatments with clinicians has long been a priority at NORD, and we are committed to doing more to support their work.” Neurology Reviews vice president and group editor, Glenn S. Williams, adds, “It is gratifying to know that we are part of the rare disease community and witness to some of the exciting developments that are transforming this field.” Further, Mr. Williams wishes to thank his staff, publisher Elizabeth Katz, and the members of the NORD team for their diligent work on this publication.
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.mdedge.com/neurology; visit weekly for the latest innovative programs and multimedia initiatives.
About Neurology Reviews and MDedge Neurology
Launched in 1993, Neurology Reviews® is the first and original news source in neurology. Neurology Reviews® has a 27-year 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 nearly 25,000 neurologists and clinicians interested in neuroscience, the Neurology Reviews® website www.mdedge.com/neurology, part of the MDedge™ 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. 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 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 37 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 300 disease-specific member organizations and collaborates globally to raise awareness around rare disease and advance access to treatments for our community.
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 1.2 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) and Hemedicus (www.hemedicus.com).