In his 10 months on the job, Commissioner Scott Gottlieb of the U.S. Food and Drug Administration is earning praise for his efforts to make clinical trials for new therapies more flexible and responsive to the needs of rare disease patients. From cystic fibrosis to epidermolysis bullosa, the FDA…
Rare Disease Groups Welcome FDA’s Embrace of ‘Real World’ Data in Clinical Trials
It has been just over a month since the successful launch of the Pulmonary Fibrosis News Forums, and we have many of you to thank. The activity created on these new forums tells us that this type of website has been helpful for patients and that it can be…
Increasing the production of lipids in the lungs may help slow pulmonary fibrosis progression and potentially lead to new treatment options, a study suggests. The study, “Lipid Synthesis is Required to Resolve ER Stress and Limit Fibrotic Responses in the Lung,” was published in the American…
The Pulmonary Fibrosis Foundation (PFF) has named Pauline Bianchi, a veteran nurse and pharmaceutical industry expert, its vice president of research and development. Two of her roles will be overseeing the PFF Care Center Network and PFF Therapeutics Network, key elements of the organization’s strategy to improve care and…
If you have been reading my previous columns, you might recall that at the beginning of the new year, I decided to write a gratitude piece as each month in 2018 comes to a close. It is hard to believe this is the case for February already!…
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…
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,…
