Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…
Latest NORD Webinar Offers Insights on Starting Nonprofit, Patient Registry
The words “palliative care” often frighten those of us living with a life-threatening illness. This is because the term historically has been associated with end-of-life care due to its link with hospice care. But the two terms were formally separated in 1990, when the World Health Organization officially recognized palliative…
A first patient has been enrolled in a proof-of-concept Phase 2 trial of C21 (VP01), Vicore Pharma’s investigational oral therapy for idiopathic pulmonary fibrosis (IPF) and other lung diseases. “We are pleased to announce that we can now start our IPF trial despite the ongoing COVID-19…
The Pulmonary Fibrosis Foundation (PFF) plans to launch “Pinpoint PF,” an educational and awareness campaign for those at risk of pulmonary fibrosis (PF) or showing symptoms, in December. “We introduced the campaign … during the PFF’s virtual Volunteer Meeting and received an enthusiastic response from our PFF Ambassadors…
Newly developed therapies may hold promise for the treatment of pulmonary fibrosis, as described in two studies. The therapies, which are expected to move into clinical trials in the next several months, were both developed by Purdue University scientists in Indiana, led by Philip…
Even in normal times, holidays can be a huge vector for illness. Viruses that thrive during the colder months, such as influenza, can cause serious problems for those with compromised immune systems or poor pulmonary function. This year, with the novel coronavirus, the…
The National Heart, Lung and Blood Institute, part of the National Institutes of Health, has granted $920,000 to a team of researchers at the University at Buffalo (UB) to develop a model that mimics human lung tissue. The researchers say their model should offer an accurate and rapid…
Learning to use supplemental oxygen as a young adult was arguably the hardest part of my idiopathic pulmonary fibrosis (IPF) diagnosis. My life changed once I required the help of a plastic tube with two prongs up my nose to complete basic tasks that most people take for…
Esbriet (pirfenidone) or Ofev (nintedanib) treatment in adults with idiopathic pulmonary fibrosis (IPF) led to changes in blood markers reflecting reduced systemic inflammation and oxidative stress after 24 weeks of therapy, a small study found. …
Bridge Biotherapeutics and Boehringer Ingelheim ended a collaboration and license agreement to develop BBT-877, a potential treatment for idiopathic pulmonary fibrosis (IPF) and other fibrotic disorders. The companies entered into an agreement in July 2019 and, although no details were provided about its termination, the…
