~ Published in February in honor of Rare Disease Day—February 29, 2016 ~
Parsippany, NJ – February 29, 2016 – The Rare Neurological Disease Special Report™ is published in collaboration with the National Organization for Rare Disorders (NORD) as a supplement to the February 2016 issue of Neurology Reviews® (NR). This Special Report honors Rare Disease Day (February 29th, 2016) and is easily accessible at NeurologyReviews.com.
The estimated 7,000 rare diseases, many of which are neurological, are not so rare as they collectively affect more than 30 million Americans, or one in 10 people. This year’s comprehensive Rare Neurological Disease Special Report™ covers many challenging issues that healthcare professionals (HCPs) confront in their continuum of care for the patients they suspect or have been diagnosed with a rare disease.
Extending beyond education, to advocacy, the Rare Neurological Disease Special Report™ covers the role of geneticists in the diagnosis and management of patients with rare diseases; the many services provided by specialty pharmacy; and the diagnosis and treatment of specific rare conditions such as Lennox-Gastaut syndrome, lysosomal storage disorders with neurological components (Pompe disease, Gaucher disease, Fabry disease, and others), multiple system atrophy, pediatric epilepsy, Huntington’s disease, and myoclonus ataxia syndrome. Current changes the government and the NIH are taking to serve these small but desperate populations in need are covered and additional content from patient advocacy associations — Hereditary Neuropathy Foundation, Child Neurology Foundation, LGS Foundation — broaden the informative and educational value of this Special Report.
NORD’s continued efforts, in part through hosting and sponsorship of Rare Disease Day in the U.S., have led to significant advances supporting the development and availability of new therapies. NORD works with Frontline Medical Communications (FMC) and Neurology Reviews® on certain initiatives related to rare diseases to support their mutual goals to raise awareness and provide HCPs important and timely rare disease content. The partnership seeks to address the complex and often challenging needs of patients and families affected by rare diseases, through the Rare Neurological Disease Special Report™ and other educational programs designed to reach HCPs with content targeted to meet their unmet needs.
FMC and Neurology Reviews® offer extensive digital and print opportunities, custom programs, and exclusive sponsorships. To request your copy of the Rare Neurological Disease Special Report™ or to discuss future initiatives in support of your brand, please contact Elizabeth Katz, Publisher and Director of Medical Communications, by phone at 973-224-7951 or by email at ekatz@mdedge.com.
About Neurology Reviews®
Neurology Reviews® is the first and original news source in neurology. Neurology Reviews® has a 23-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 and relevant news affecting the practice of neurology and all its subspecialties. In addition to the monthly print issue reaching over 23,000 neurologists and clinicians interested in neuroscience, the Neurology Reviews® website (www.neurologyreviews.com) features timely on-site conference reporting, audio and video interviews with researchers, expert commentaries, disease-specific microsites, self assessment quizzes, patient handouts, and sponsored multimedia educational programs, a calendar of relevant medical meetings, and a career center listing job openings around the country.
About National Organization for Rare Disorders®
The National Organization for Rare Disorders (NORD)® is the leading nonprofit organization representing the 30 million Americans who have rare diseases and those seeking to improve their lives. Since 1983, NORD has served as the voice of the rare disease patient community, providing advocacy for fair and enlightened public policies; education for patients, their families, medical professionals and the public; and leadership/ representation for rare disease patient organizations. NORD supports medical research to promote the development of safe, effective diagnostics and treatments, and it provides a broad array of Patient Assistance Programs to assure patient access to treatments. NORD represents more than 200 disease-specific member organizations and partners with many other organizations in specific causes of importance to the rare disease patient community. Visit us at www.raresdiseases.org. Follow us on Twitter | Like us on Facebook.
For more information about Rare Disease Day®, visit http://www.rarediseaseday.us.
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 multimedia engagement, meeting the marketing challenges of our pharmaceutical and device customers. We reach 1.2 million+ physicians and other HCPs with more than 30 brands serving 22 distinct market segments. Reach in print surpasses 790,000 and extends digitally with 125 eNewsletters, 40 active Web sites, mobile apps and digital editions. FMC delivers medical news daily generated from on-site reporting at major medical meetings and in collaboration with notable societies and medical associations. FMC produces 18 live events and digital click-for-credit CME through affiliation with Global Academy for Medical Education, LLC (globalacademycme.com). Visit us at www.frontlinemedcom.com. Follow us on Twitter | Like us on Facebook
Contacts:
Elizabeth Katz, Publisher/Director of Medical Comm., FMC, 973-224-7951, ekatz@mdedge.com
Mary Dunkle, Vice President for Educational Initiatives, NORD, 203-744-0100, mdunkle@rarediseases.org
For details, click here to read the press release as a PDF.
Frontline Medical Communications (FMC)
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Parsippany, NJ 07054-4609
Main: 973.206.3434 | Fax: 973.206.9378
www.frontlinemedcom.com | www.frontlinerates.com
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National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
Danbury, CT 06810
Office: 203-744-0100
www.rarediseases.org