Databasing and the promise of of orphan drug discovery
This past week marks at least three news stories touting the hope and promise of databases as tools supporting rare disease patients and orphan drug discovery. These events include the launching of a genome database to sequence DNA of Cancer and rare disease patients in Britain, the announcement of “Registries for All Diseases” as a winner of Sanofi ...
Building Rare Disease Communities, one disease at a time
When Ben Munoz had his own experience with rare disease in 2006 he decided to build an online support group for patients like himself. Since that time, Ben and his team have created a network of online patient communities dedicated to providing support for rare disease patients. Today, his website entitled “Ben’s Friends” is responsible for ...
Do orphan drug exclusivity provisions reduce patient access to existing drugs?
Authors Murphy, Puwanant and Griggs in a recently published study in the Annals of Neurology journal posed this question. The authors suggest that while orphan drug incentives encourage innovation and research on rare disease, the consequences of these incentives have been associated with unacceptably high drug costs. Using the examples of 3 neurological products ...
Shire to publish Rare Disease Impact Report
(Reprinted from Shire press release 11/19/2012) Shire plc (LSE: SHP, NASDAQ: SHPGY) today announced a new initiative – the Shire Rare Disease Impact Report – to research the health, psycho-social, societal and economic impact of rare diseases in patient and medical communities. Comprehensive surveys of patients, caregivers, physicians, payors and thought ...
UK Department of Health provides summary of responses for rare diseases plan
In February of 2012 the European Council Recommendation on Rare Disease requested responses aimed at measures designed to combat rare disease in Europe. Last week, the council release a summary of responses from clinicians, general practitioners NHS commissioners, researchers, patient support groups, pharmaceutical industry along with patients and caregivers. ...
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Databasing and the promise of of orphan drug discovery
Building Rare Disease Communities, one disease at a time
Do orphan drug exclusivity provisions reduce patient access to existing drugs?
Shire to publish Rare Disease Impact Report
UK Department of Health provides summary of responses for rare diseases plan
Rare Disease Advocacy Group backs Research Challenge Contest for PXE
Is the orphan drug market too crowded?
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