At a time of unprecedented polarization in Congress, two U.S. lawmakers — one Republican, one Democrat — are stressing the urgency of working across the aisle to help the estimated 30 million Americans with rare diseases. Rep. Leonard Lance (R-New Jersey) and Sen. Amy Klobuchar (D-Minnesota) spoke to more…
US Lawmakers Urge Bipartisan Support for Rare Disease Research, Patients’ Needs
Using statins to prevent cardiovascular disease is safe for idiopathic pulmonary fibrosis patients, according to an analysis of trial data on the IPF therapy Ofev (nintedanib). Statin therapy does not contribute to lung function decline or diminish Ofev’s effectiveness in IPF patients, researchers said. Their analysis of data from…
Being diagnosed with pulmonary fibrosis is tough, don’t get me wrong. If I could wave a magic wand and not have PF, I would. As I’ve grieved over the last three and a half years, I’ve come to appreciate some positives related to this diagnosis. To learn more…
The Feldman Family Foundation will hold its 5th Annual Texas Hold ’Em poker tournament to raise funds for pulmonary fibrosis research on Saturday, March 10, in the Chicago area. Foundation officials said the event will be in the grand ballroom of the Chevy Chase Country Club in Wheeling, Illinois. It…
Some people would call me unlucky to have life-threatening idiopathic pulmonary fibrosis (IPF) at the age of 28. Even more would agree that I have bad luck if they knew that the prognosis for this disease was three to five years. I am approaching my second year after diagnosis,…
On last week’s Rare Disease Day, held Feb. 28, Boehringer Ingelheim launched a new campaign titled “Why Wait in IPF?” to raise awareness about the importance of early diagnosis of idiopathic pulmonary fibrosis (IPF) and treatment with anti-fibrotic drugs. Even though international guidelines recommend treatment with anti-fibrotic drugs…
An engineered protein called AD-114, being tested to treat idiopathic pulmonary fibrosis, helped to prevent inflammatory cells from infiltrating and collagen from accumulating in the lungs in a mouse model of the disease. These findings were part of a collaborative preclinical study conducted by researchers at Alfred Hospital and Monash…
Retrophin and the U.S. subsidiary of Britain’s Horizon Pharma will each donate $3 million over a six-year period to the Rare Disease Institute (RDI) at Children’s National Health System in Washington, D.C., helping it to strengthen care available and expand as a “center of excellence” for rare…
Today, Feb. 28, is Rare Disease Day. Rare Disease Day is a movement founded by EURODIS, a nonprofit alliance that is the voice for people living with rare diseases in Europe. Since its inception in 2008, Rare Disease Day has taken place on the last day of…
A new subtype of stem cells that have the unique ability to perform two distinct functions at the same time was recently discovered by researchers at University of Queensland (UQ)Â in Australia. These cells can generate both endothelial and mesenchymal cells, meaning they hold the potential to regenerate or…
