The fourth annual Raise Your Hand campaign launched this week, and it’s already creating a social media buzz. This campaign, sponsored by Lundbeck, raises awareness and support for rare disease research. It also gives a spark of hope to patients previously left on the sidelines in the quest for a treatment. read more >
Reprinted with permission from FDA Matters: By Steven Grossman
The Orphan Drug Act (ODA) turned 30 this month, demonstrating that good laws really can have an enduring impact. Amidst the celebrations, a reporter asked me a provocative question: Can we afford more orphan drugs costing hundreds of thousands of dollars per year? FDA Matters answered “yes”. read more >
Jack Klugman touched the lives of millions of Americans through his support for what ultimately became the Orphan Drug Act. By portraying on his Quincy, M.E. television show the plight of people with rare diseases with no treatment, Mr. Klugman focused a spotlight on the need for incentives to encourage the development of therapies for small patient populations. He did this in partnership with patients and patient advocates who had been unable to gain national attention until he lent his support. read more >
NORD has strongly supported the establishment and expansion of the Compassionate Allowances Program created four years ago by Social Security Commissioner Michael Astrue and his staff. This program fast-tracks the review of applications for disability assistance from people with devastating and, in many cases, rare diseases.
To illustrate the impact this program has had on the lives of many patients and their families, we are sharing with you the following story sent to us by a young wife and mother named Katie. read more >
For a while now, members of NORD’s leadership have been interested in finding ways to better understand the economic costs of not being able to manage rare diseases effectively and safely. In other words, we often have little idea of the total annual costs of looking after, and caring for, someone with a specific rare disorder – especially when this may include extended periods in hospitals, multiple visits to emergency departments, and other high-cost services. read more >
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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