Rare Disease Report
Rare Disease Report is a web resource for physicians, other healthcare professionals, scientists, advocates, patients, and investors interested in rare diseases. It features video InterViews, Panel Discussions, major medical conference coverage, daily medical news, STOCK prices, news feeds, and a calendar of events of upcoming medical conferences. A newsletter is sent out each week as well as for special breaking news stories to approximately 50,000 clinicians. All content in Rare Disease Report is free and does not require registration. The website was initially launched in 2012. In December 2013, it was bought by Intellisphere LLC.
Company areas (Medicine, Advocacy, Conferences, etc.)
The site’s homepage is where the website hosts its most recent articles, videos, social media posts, and upcoming events. It also has a search engine and sign up portal for the newsletter.1 The Specialties subpage provides a breakdown of articles and videos linked to specific medical specialties (cardiovascular, endocrinology, genetic, hematology, infectious diseases, lysosomal storage disorders, musculoskeletal, nephrology, neurology, oncology, respiratory). Medicine is a subpage focused on articles and videos explaining treatment options for patients with rare diseases. Advocacy is a subpage focused on articles and videos explaining the role of patients and patient advocacy in the rare disease space. Business/Regulatory is a subpage focused on legal and investment issues that impact orphan [...] development and marketing in the rare disease space. Conferences is a subpage focused on coverage of the major medical and rare disease meetings held throughout the year. Rare Disease Focus subpage provides a breakdown of articles and videos related to a specific rare disease (Castleman’s diseae, Cushing’s disease, Duchenne muscular dystrophy, Fabry disease, Gaucher awareness, HoFH, familial chylomicronemia syndrome).
The RDR Stock Portfolio provides up to date stock information on all major pharmaceutical and biotech companies with orphan drugs.
How Rare Disease Report relates to Pharmacy Times and HRA
Rare Disease Report is owned by Intellisphere LLC, which also owns Pharmacy Times, American Journal of Managed Care, CURE, HCPLive, HRA (Healthcare Research & Analytics), OncLive, PainLIve, Physicians’ Education Resource, CURE, and Physicians Money Digest.
Medical partners with the following
Global genes 2 National Organization of Rare Disorders (NORD) 3 Lysosomal Disease Network 4 World Orphan [...] Congress USA World Orphan [...] Congress EU 5 Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) 6 CBINET 7 Informa Life Sciences 8 Association for Glycogen Storage Disease 9 Rare Disease Legislative Advocates 10 Patients as Partners 11 University Pennsylvania Center for Orphan Disease Research 12 GTCBio 13