SAVE THE DATE: 3rd Annual Rare Disease Symposium February 2012
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Innovation at the Margins: Rare Disease Research
Rare disease research is on the rise, and that’s good news for the 25 million rare disorder patients in the U.S. In fact, it’s good news for all of us, because the insights that we gain from this research can lead to pharmaceutical innovations that extend beyond the rare sphere, affecting the medical industry as [...]
6th Annual Rare Disease Leadership Summit – Register to attend TODAY!
On the Forefront of Orphan Drug Development – Re-examining the Orphan Drug Act and Key Initiatives Impacting the Clinical, Regulatory and Reimbursement Landscape July 12-13, 2011,Washington, District of Columbia In 2011, CBI is proud to present its 6th Annual Rare Disease Leadership Summit at a critical time for this community. Advocates of the 5,800 rare [...]
More Than 400 Medicines in Development to Treat or Prevent Rare Diseases
A recent report released by PhRMA states that more drugs are currently in development for rare diseases than have been released in over 20 years since the Orphan Drug Act! The Pharmaceutical Research and Manufacturers of America (PhRMA) represents the country’s leading pharmaceutical research and biotechnology companies, which are devoted to inventing medicines that allow [...]
GLOBAL GENES PROJECT ANNOUNCES “WEAR THAT YOU CARE™” DENIM AWARENESS CAMPAIGN FOR RARE DISEASE DAY 2011
Statistics Show 95% of Rare Diseases Have No FDA Approved Drug Treatments; Only 352 New Drugs Developed and Approved For Tens of Millions of People Since 1983 DANA POINT, Calif. – January 26, 2011 – Monday, February 28, 2011, is the 4th annual Rare Disease Day — a day when people worldwide will show their [...]
Improve FDA’s Rare Disease Review Process
The Jewish Daily – FORWARD Opinion By Jonathan Jacoby The Jewish community has long been a leader in supporting medical research and education efforts, especially with regard to those diseases that disproportionately afflict people of Ashkenazi Jewish descent. Creating coalitions with other patient advocates in the rare disease community would give American Jews an opportunity [...]
Turning Science into Medicine – a Political Perspective
Our Government has an immense capability to help advance treatments and cures for rare diseases through incentives for industry, research grants, and improving regulatory conditions; however, our politicians often lack the public support to challenge the status quo and make good changes to the system. Our democratic system was created to be responsive to the [...]
R.A.R.E. Project's, Jonathan Jacoby to present at FDA Hearing on Rare Disease
On Tuesday, June 29, 2010, and Wednesday, June 30, 2010, FDA’s Office of Orphan Products Development will host a two-day public hearing and Webcast on the Development of Articles for Rare Diseases. This public hearing is intended to gain from health care providers, academia, industry, patients, and other interested persons their perspectives on various aspects [...]
Orphan Drugs Rare Disease Opportunity, Investors Eye
Orphan drugs don’t have the potential patient numbers that cholesterol or diabetes drugs have, but that doesn’t mean you should ignore them either. What they lack in volume they make up for in price.



