by Patrick Dunn, International Pemphigus and Pemphigoid Foundation
As many in the rare disease community know, one of the biggest challenges facing an organization focused on supporting patients is raising awareness. We build networks of support and information, but how do we reach people suffering through symptoms of a disease they don’t know exists? How do we ensure that medical professionals are knowledgeable about these diseases so that patients receive correct diagnoses?
For the International Pemphigus & Pemphigoid Foundation (IPPF), these questions are the basis of a new Awareness Campaign. The goal of this campaign is to reduce both the amount of time patients spend searching for a diagnosis and the number of healthcare providers patients see before receiving that diagnosis.
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 >
Imagine knowing something is wrong with your baby, but medical professionals cannot provide a diagnosis. Frustrated and scared, you spend every waking moment agonizing about your child’s health and quality of life; you feel helpless and alone. Nobody seems to understand, and some people even insist your child is fine and you are overreacting. Deep down, you know there is something wrong. That is what the Hoffmans experienced after the birth of their son, Ethan. read more >
The National Organization for Rare Disorders (NORD) focused a spotlight on individuals and families who display great courage as they live with rare diseases at its Portraits of Courage Celebration last night.
It can be disheartening for rare disease patients to consider the problem of diagnostic delay. As NORD’s recent informal survey revealed, more than half of us spend three years or more looking for diagnosis and treatment. Once we find it, it’s natural to want to put the whole problem behind us. 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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