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 >
Patients who are prescribed orphan drugs often can only get them through specific “specialty” pharmacies. Why is that? What do these specialty pharmacies do that is so special for the patients who use them and for the pharmaceutical manufacturers that hire them? What has been the experience of patients and pharmaceutical manufacturers with specialty pharmacies? The panel I am moderating at the NORD Breakthrough Summit on October 21, 2014 at 4:15 pm will explore these and other related questions. read more >
Editor’s note: The following blog is being published to highlight Blood Cancer Awareness Month and MPN Awareness Day.
I was diagnosed with essential thrombocythemia (ET) at age 16 after collapsing in my high school cafeteria. At that time, lab results showed I had a platelet count of over 1 million and my world was forever changed. During the last 18 years, I have traveled along the highs and lows of platelet counts, treatments, and the emotions of this blood cancer. ET has created some of the worst fears I’ve had in my life, but has also given me more purpose than I could have hoped for at a young age. read more >
I’m honored to be speaking at the NORD Breakthrough Summit on Rare Diseases and Orphan Products in October. Social media, as I continue to learn more every day, is an always changing, rapidly moving, fickle and funny world. Trends can get hot and can come and go overnight, and others go on and on (ALS). Our journey for the last year has been to advocate and fundraise for Sanfilippo Syndrome, with which my 4-year-old daughter Eliza was diagnosed. This rapidly degenerative, terminal disease has no treatment to slow it, and no cure..but a clinical trial is potentially only months away. We’ve been fortunate to have some ideas take off and be successful in the social media world, like the 3- minute viral video at www.SavingEliza.com, which raised over $1M in less than 3 months. At the NORD Summit, I will talk about how that came to be and lessons learned along the way.
Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17. A gifted basketball player, Dorien had no warning signs of an underlying heart condition. Upon autopsy, Dorien was diagnosed with cardiomyopathy, an incurable and potentially life-threatening disease that affects how the heart muscle pumps blood through the body. 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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