» » » ADVOCACY ALERT « « « November 2012 Dear NORD Members and Friends: You have an opportunity today to do something incredibly important to promote the development of life-saving therapies for people with rare diseases. Congress has just returned from its post-election recess. Now our nation is in a countdown to devastating budget cuts that will go into effect for NIH, FDA and other government agencies on January 1 if Congress doesn't Take Action to resolve the budget … [Read more...]
Jennie Anderson, AIDS.gov ~ 30 Years of AIDS Video, NIH’s Dr. Anthony Fauci
August 23, 2011 by Leave a Comment
This has been a big year for the HIV community. One key event was June 5 — which marked 30 years since the first reported cases of AIDS in the United States. As one of the many efforts to recognize this important milestone, the U.S. Department of Health and Human Services (HHS) developed a series of videos featuring interviews with various federal and community HIV leaders. Highlights from each of the videos were used to create a compilation video, 30 Years of HIV in the US, which premiered … [Read more...]
NORD: 1st Annual U.S. Conference On Rare Diseases & Orphan Products
August 11, 2011 by Leave a Comment
Stellar Lineup of Speakers Announced for U.S. Conference On Rare Diseases And Orphan Products Join all stakeholders – patient advocates, researchers, government, industry, investors – in this 1st Annual Summit featuring thought leaders and focusing on collaboration! You are invited to the 1st Annual U.S. Conference on Rare Diseases and Orphan Products to be hosted by the National Organization for Rare Disorders (NORD) and the Drug Information Association (DIA). Additional … [Read more...]
WORLD AUTISM DAY – April 2, 2011
April 3, 2011 by Leave a Comment
In a global observance, UN rallies support for people suffering from autism People with autism need support early on in life. This appeal comes from United Nations Secretary-General, Ban Ki-moon, in his message on World Autism Day observed on 2 April. The Secretary-General says that some people with autism suffer terrible discrimination, abuse and isolation and this violation of their human rights cannot be tolerated. "We can support parents. We can create jobs for … [Read more...]
