Improving Drugs and Biologics for Children – Washington DC Briefing
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When RARE is not so RARE!!!
When RARE is not so RARE! By Nicole Boice, Founder/President, RARE Project Did you know that there is a community of sick and disabled women, children, and men that is so large that it outnumbers all of those with cancer and AIDS combined worldwide? Scary to think about? Can you guess what it is? Staggering [...]
SOCIAL MEDIA BRIEFING – A SUCCESSFUL TOOL FOR THE RARE DISEASE COMMUNITY
Please join Inspire and the Biotechnology Industry Organization (BIO) in Washington, DC, on June 8, 2011, for a half-day seminar, “Collaborations through Social Media.” The free event will take place from 9:00 a.m. to noon EST at BIO’s headquarters, 1201 Maryland Ave, SW, Suite 900, in Washington, DC. An RSVP is required for security purposes. Please [...]
BIO National Convention – Call out to Patient Groups – END OF DAY TODAY!!
The BIO International Convention has a tremendous tradition of connecting the Life Sciences Community of Stakeholders. Each year, BIO brings more opportunities to the table for patient advocacy groups to attend this event, garner exposure for their organization, and enjoy the benefits of the week long event. Incredibly enriching and a must attend event for [...]
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 [...]
World Rare Disease Day Efforts Underway from Global Genes Project
Global Genes Project volunteers working on multiple programs to build awareness and support World Rare Disease Day, Feb 28, 2011! Ever want to be part of something bigger? Ever want to really feel like people are helping champion your cause. Well. . . they are. The Global Genes Project was developed by the rare disease [...]
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 [...]