While all drug launches are complex, launches of rare disease treatments are particularly so. Our experience suggests that companies that launch rare disease treatments must excel in four areas.
planrareThis chapter examines the background to the campaign for a plan for rare diseases in the UK, and the establishment and role of Rare Disease UK (RDUK) in lobbying for a plan. RDUK's experience has been used to develop recommendations to inform other national alliances seeking to ...
Rare disease (RD) management and orphan drug development in India face various hurdles regarding the implementation and adoption of comprehensive policies, lack of dedicated regulatory frameworks, and absence of epidemiological data. Current rare disease policy focuses more on strengthening the diagnostics ...
Pharmaceutical companies are using recent advances in digital technologies to improve care strategies and provide hope for rare disease patients across thousands of different rare diseases.
How has rare disease care changed over the last few years? And what might we expect from the next five? We attended the Rare Disease Day Virtual Parliamentary Event to find out. The rare disease community has a golden opportunity to transform the way car
rare disease as any condition that affects fewer than 200,000 people in the U.S (1). Estimates of the number of people living in Canada with a rare disease vary widely; one estimate is that one in 12 Canadians, two-thirds of them children, live with a rare disease, wh...
An unconventional disruption of rare disease. Post-Pandemic Patient Engagement Did you launch a new product or engagement effort during COVID? If so, you’re likely fighting an uphill battle trying to connect with patients. Traditional patient outreach relied heavily on leveraging in-person interactio...
JD Health announced to establish its “Rare Disease Care Project” on Feb. 27 at a launch ceremony in Beijing.
(3). Numerous factors can lead to a rare disease diagnosis, however around 80% of those diagnosed are caused by genetic factors with a high percentage starting in early childhood(4). A rare disease diagnosis carries a lifelong sentence of struggle for patients and their families as these ...
The Rare Disease TAGs frequently experienced it, since rare diseases are found in every area of medicine. In such instances, the WHO assigned the primary responsibility for a chapter or section structure to a “primary TAG”, while other interested TAGs remained free to add and edit information...