NORD e-News: July 2011 Edition Send a Message to Congress on NORD Website Federal budget cuts have been proposed to Medicare reimbursement for drugs and biologics as part of a compromise to raise the debt ceiling. One proposal under consideration is to move orphan products from Medicare Part B coverage to Part D. This could greatly increase the cost for some patients and families dependent on lifesaving orphan drugs and biologics. You can quickly and easily submit a message to President … [Read more...]
NORD e-News: July 2011 Edition
July 26, 2011 by admin
Filed Under: Courtney's Story Tagged With: (ABTA), (AMDA), (NIH)., A Celebration of Women, Acid Maltase Deficiency Association, American Brain Tumor Association, benefit-risk analysis, Congress to Fund NCATS, Diane Dorman of NORD, Duke University, EURORDIS, FDA, FDA Office of Orphan Products, Illinois, innovation, Janet Woodcock, July 2011 Edition, Lincolnshire, MD, Medicare, MPH, NORD, NORD e-News, orphan drugs and biologics, Take Action, Timothy R. Coté, women taking action, women.
NORD Foundation – May 2011
May 20, 2011 by admin
May 2011 ~ eNews NORD to Co-sponsor 1st Annual Rare Diseases/Orphan Products Summit NORD will co-sponsor the 1st Annual Rare Diseases/Orphan Products Summit on Oct 11-13, under the auspices of the Drug Information Association (DIA). Collaborating organizations include EURORDIS (the European Rare Disease Organization), FDA, NIH, and Duke Clinical Research Institute. In addition to plenary sessions with senior government, industry, and patient speakers, there will be three tracks at the … [Read more...]
Filed Under: Courtney's Story Tagged With: A Celebration of Women, advocacy, audiences, brain diseases, chronic sarcoidosis, Commissioner Margaret Hamburg, Congressional Caucus, corticobasal degeneration, Courtney' s Story, disease, education, eNews, enhanced collaboration, European Rare Disease Organization, EURORDIS, government., greater transparency, including medical professionals, industry, information, May 2011, MD, Medical Foods Equity Act, multiple system atrophy, NIH Chemical Genomics Center, NORD Foundation, PML., progressive supranuclear palsy, Rare Disease Org., Recent Drug Approvals, registration, Related Brain Diseases (CurePSP), science-based decision-making, Senator Bob Casey, Tammy Baldwin, viral disease, virus, WOMEN of ACTION™, women taking action, women.
NORD – Newsletter @ April 2011
April 28, 2011 by admin
Forward this to a friend April 2011 eNews New Consortium Promotes Global Approach to Rare Diseases NORD and other patient advocates participated in the recent launch in Washington, DC of a new international consortium to promote global collaboration on rare diseases and orphan products. The International Rare Disease Research Consortium (IRDiRC) has set some ambitious goals, including the development of 200 new rare disease treatments by the year 2020 and the … [Read more...]
Filed Under: Courtney's Story, FEATURED Tagged With: A Celebration of Women, Affordable Care Act, AIDS, Australia!, challenges, Compromises, Courtney's Story, CT, Danbury, EURORDIS, HIV, Medicaid Innovation Seeks Ideas, National Organization for Rare, Newsletter @ April 2011, NORD, Orphan Diseases, Orphan Drug Act, PML., Rare Diseases, rarediseases.org, Shriners Hospitals for Children, The Courtney Project, The Innovation Center, Treatment of Rare Diseases, WOMEN of ACTION™, women taking action, women with diseases, women.
