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Bilirakis Joins Bipartisan Colleagues With a Rare Disease Advocate Running Across America
... – Yesterday, Congressman Gus Bilirakis (R-FL) joined Rare Disease Caucus Co-Chair Congressman Lance (R-NJ) and Congressman Garamendi ...
2015-03-18 11:29
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Op-Ed: “Giving a Voice to Rare Disease Patients”
... Diseases like cancer, ALS, Alzheimer’s, and the 7,000 rare conditions. These discussions were eye-opening to me. I got a true sense ... major incentive to repurpose mainstream treatments for rare disease patients because each disease impacts a small number of patients—even ...
2016-11-22 00:00
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A RARE Week
Rare Disease Week gave us the opportunity to raise awareness and encourage research to find cures and treatments for rare diseases. Rare diseases are not so rare in our nation. Some RARE ...
2016-03-04 00:00
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Bilirakis: “OPEN Act has the potential to result in hundreds of new treatments for rare diseases”
... ACT, to open the door for hundreds of new treatments for rare diseases. Click here for more information on the hearing. See below ... Bilirakis : “There are about 500 approved rare disease drugs, but 7,000 rare diseases affecting some 30 million Americans. ...
2017-03-22 17:33
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Bilirakis’ Legislation Opens the Door to Treatments for Rare Diseases
Washington, D.C. – In honor of Rare Disease Day today, U.S. Representative Gus Bilirakis (FL-12) introduced the ...
2017-02-28 10:20
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ICYMI: Bilirakis wants incentives to treat rare diseases
... to repurpose major market drugs for life-threatening, rare diseases and pediatric cancers, the Palm Harbor Republican said, which ... the door to development of hundreds of treatments for rare disease patients. “There are over 7,000 rare diseases, impacting 40 ...
2014-11-24 01:40
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Bilirakis Questions Witnesses Regarding Rare Diseases, Combination Products
... 21st Century Cures hearing about repurposing drugs to treat rare diseases and combination products. “There are over 7,000 rare ... 95% of these diseases have no treatments, because each rare disease impacts a small number of patients. My bill, the OPEN Act will leverage ...
2015-04-30 00:00
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ICYMI: 1 in 10 by Rep. Gus Bilirakis
Individually, each rare disease impacts less than 200,000 people. With such a small patient population, rare diseases hardly gain the attention that more widespread diseases such as ...
2015-05-14 00:00
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ICYMI: Positive changes to improve health care access by Rep. Gus Bilirakis
... with cancer, suffers from Alzheimer's, or is living with a rare disease (30 million Americans have a rare disease — rare diseases are not a ...
2015-06-08 00:00
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Bilirakis Praises #Cures2015 Second Discussion Draft
... system for neurological diseases, including Parkinson’s disease . Nearly 1 million people in the United States live with Parkinson’s ... to “repurpose” major market drugs for life-threatening rare diseases and pediatric cancers, opening the door to the development of ...
2015-04-29 00:00