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We are creating a place where we can share ideas, provide the perspective of America's biopharmaceutical companies and, most importantly, listen to you.

Biopharmaceutical Companies Recognized as Meaningful Places to Work

By John Tunnell  |    May 22, 2015
Loretta was diagnosed with Stage 4 lung cancer 12 years ago - but thanks to medical breakthroughs and innovative medicines, she is living a happy, active life today. Matt was given a five percent...   Read More

New Report Highlights a Decade of Innovation in Rare Diseases

By Stephanie Fischer  |    March 5, 2015
Despite Scientific Challenges, Biopharmaceutical Researchers Making Progress against Rare Disease While any given rare disease affects fewer than 200,000 people in the U.S., rare diseases...   Read More

Week in Review: Keeping Patients In-The-Know

By Christian Clymer  |    February 27, 2015
Many patients are not aware of the harmful effects that non-adherence to needed medicines can have on their health, lifestyle and the economy. This week, we explored the ways in which medication...   Read More

Working Together to Stop Ebola in its Tracks

By John Castellani  |    November 13, 2014
The fantastic news came yesterday that Dr. Craig Spencer, the last patient in the U.S. with Ebola, has been cured. While this development certainly inspires hope, there is still much to be done in...   Read More

Empowering Patients to Be Active Participants in Clinical Trials

By Stephanie Fischer  |    October 2, 2014
One of the topics of discussion at the recent Rare Patient Advocacy Summit hosted by Global Genes was the role of patients in healthcare.  A statement that clearly resonated with the audience,...   Read More

Collaboration is What Will Help Drive New Successes for the Rare Disease Community

By Stephanie Fischer  |    March 26, 2014
While the number of patients with any individual rare disease is relatively small (less than 200,000 in the U.S., as defined by the Orphan Drug Act of 1983), they collectively affect 1 in 10...   Read More

NORD on the Need for More Collaboration to Drive Progress for Rare Disease Patients

By Stephanie Fischer  |    February 17, 2014
Many biopharmaceutical companies are actively engaged in the research and development of therapies to treat rare disease, despite challenges such as much smaller patient populations than more...   Read More

#RarePOV Conversation Generates Strong Enthusiasm for Rare Disease Day on February 28th

By Stephanie Fischer  |    February 12, 2014
In last week’s #RarePOV tweetchat, leading rare disease advocacy organizations and individual patient advocates came together to share resources and plans for the upcoming international Rare...   Read More

Addressing Challenges in Rare Disease Drug Development - Together

By Stephanie Fischer  |    January 27, 2014
Dr. Richard Moscicki, Deputy Center Director for Science Operations at the Center for Drug Evaluation and Research at the Food and Drug Administration (FDA), noted in his remarks  at the FDA ...   Read More

Rare Disease Community Loses a Champion

By Stephanie Fischer  |    January 15, 2014
The rare disease community lost a champion last week when Sam Berns passed away at age 17 due to complications from progeria, an extremely rare genetic disease which causes accelerated aging. ...   Read More

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