Tag Archives: rare diseases
By Guest Blogger | Published: December 2, 2013
By Leela Barham. The European Commission mandated that all member states have a plan for rare diseases back in June 2009. With the EC deadline just weeks away, the UK has now finalized its own. But for those who were hoping it would have a clear focus on access to medicines, there’s little to be optimistic about.
By Clark Herman | Published: March 1, 2013
The rare disease advocacy community convened yesterday for its annual Rare Disease Day celebration, marking another year of advances in the fight against ailments once almost entirely ignored by big Pharma. The fact that hundreds of rare diseases are finally attracting real attention from major researchers, not to mention big dollars, is attributable not [...]
By Ben Comer | Published: July 20, 2012
At CBI’s 7th Annual Rare Disease and Orphan Drug Leadership Congress, speakers and attendees identified areas where pharma can improve the way it approaches rare disease and treatment.
By Jennifer Ringler | Published: February 28, 2012
Patients, policymakers and pharmaceutical companies are uniting around rare diseases on the rarest of calendar days, presaging a leap forward in health outcomes and business opportunities. Aligning humanistic objectives with business incentives is often the sine qua non of effective community activism. This year’s Rare Disease Day – hosted in the US by the National [...]
By Jennifer Ringler | Published: June 8, 2011
The Creating Hope Act of 2011, along with advancements in science and a shift in focus for Big Pharma, means that rare and pediatric orphan diseases may finally get the attention they deserve. “As a society, as we’re having this big debate around healthcare, everyone agrees that there’s a certain baseline of people that we [...]