Rare disease patients and caregivers have a lot to teach the world right now. No matter your role in the rare disease community, I would be willing to bet this is not the first time you’ve sheltered at home to avoid infection. While we may be used to taking precautions…
Pandemic Protocols Show World How Post-transplant Paranoia Feels
At 3 a.m. on July 6, 2003, Miami resident Jeffrey Goldstein got a call that would change his life. Doctors at the Duke University Lung Transplant Clinic had found a lung donor match for Goldstein, who had been diagnosed with pulmonary fibrosis two years earlier.
The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD), said it will still take place at the…
It’s hard to focus on anything other than the COVID-19 outbreak happening around the world. News reports share grim statistics and other daily details about surges in new cases, the climbing death toll, and stories of those who refuse to comply with important social distancing practices. Social media…
Idiopathic pulmonary fibrosis (IPF) is associated with a substantial economic burden in the United States, especially for patients who require hospitalization, intensive care, or a lung transplant, a study based on registry data reported. Annual average costs for 3.9 days in a hospital by patients in this study was…
Ofev (nintedanib) limits the decline in lung function in people with idiopathic pulmonary fibrosis (IPF), regardless of the degree of impairment in gas exchange in their lungs, a study suggests. According to the researchers in the study, “these data support the use of [Ofev] in patients with IPF…
Surgeons were able to successfully transplant a donor’s left lung into the right side of a patient’s lung cavity, according to a case report of a patient with idiopathic pulmonary fibrosis (IPF) — suggesting that this technique can be used under challenging situations in which donor lungs are not…
Even with the coronavirus pandemic ravaging Europe and much of the world, patient advocate Lucia Monaco, PhD, of Italy remains confident that the Paris-based nonprofit she chairs will see the approval of 1,000 new rare disease therapies by 2027. That group, the International Rare Diseases Research Consortium (IRDiRC) —…
Coronavirus news hasn’t gotten any less scary since I wrote about it two weeks ago. At the time of writing this column, the virus is in all 50 states and four U.S. territories. More than 100 U.S. citizens have died from the illness. I wasn’t planning to write about…
Stimulating the aryl hydrocarbon receptor (AhR), found across the immune system, via a naturally produced chemical protected mice from induced pulmonary fibrosis (PF) and increased their survival, a study showed. These findings support further research to determine if AhR might…
