It’s truly amazing to hear everyone’s unique personal story on why medical research is important to them. Whether it’s a parent whose son or daughter is living with a rare disease, a grandparent who has an incurable degenerative disease or a wife or husband whose spouse is battling cancer, everyone’s life in one way or another has been touched by a serious disease without a cure.
This fact makes the following statistics even more baffling. Over the last ten years, the National Institutes of Health (NIH) has received stagnant funding, resulting in the NIH losing nearly 25% of its purchasing power to inflation. Budget cuts in 2013 resulted in 750 fewer patients admitted to the NIH Clinical Center, and 640 fewer competitive grants were awarded. These trends are forcing young researchers to rethink their career path in the U.S. After all, the NIH can only accept one-sixth of grant applications due to funding shortfalls, compared to one-third of applications before this downward trend started.
The importance of NIH research cannot be overstated. NIH research benefits the economy, as every dollar in NIH funding results in $2.21 in local economic growth. The NIH supports over 400,000 jobs across the U.S., generating nearly $60 billion in new economic activity. The U.S. has gained one year of life expectancy for every 6 years since 1990, due largely to NIH research. In economic terms, this increased life expectancy can be valued at $95 trillion from 1970 to 2000. Finally, NIH research on cancer, heart disease, stroke, and diabetes prevents approximately 1.35 million deaths annually. read more >
On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st Century Cures Initiative outlining ways to improve the discovery, development, and delivery of medical treatments in the U.S. read more >
3-D printing is an exciting technology that has shown great promise in the treatment of several rare disorders. Bioprinting is a form of 3-D printing in which cells are printed or deposited on a surface layer by layer in order to produce a full organ. Lab-built organs have been shown to function well in patients, and engineered airways, bladders, blood vessels and urine tubes have been successfully implanted. An airway splint printed from biomaterials and without cells was used to save the life of an infant with tracheobronchomalacia, a rare condition where the tracheal (windpipe) cartilage is soft. The FDA approved the use of the device under the emergency-use exemption and the case report was described in the New England Journal of Medicine. read more >
There have long been clinicians and researchers with specific interests in rare and “orphan” disorders.
One of the first such clinicians who some readers may know of was Sir Archibald Garrod. Garrod was a British physician who first characterized alkaptonuria or “black urine disease” in 1902. What is more, he identified this disorder as being an inborn error of metabolism (i.e., a genetic disorder). Garrod’s early studies in this area led to the development of a whole new branch of medicine. 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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