Why I Still Consider Myself Lucky

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) in Australia. These cells can generate both endothelial and mesenchymal cells, meaning they hold the potential to regenerate or…

Two weeks ago, I was blessed to celebrate another birthday — 61 to be exact! As a PF patient, you know how significant this is. I wonder if every birthday is my last. These thoughts happen for me with every holiday and anniversary, too. I normally would not…

In recognition of Rare Disease Day 2018, Bionews Services — which publishes this website — will attend and report on three relevant conferences in the U.S. dealing with policies and programs of importance to patients and their families. The three are among 50 events in 32 states…

Those immersed in the world of idiopathic pulmonary fibrosis (IPF) know how quickly things can change from stable to critical. Regardless of whether you are a patient, caregiver, friend, or advocate, it comes as no surprise to hear how serious this disease can be. Numerous factors can contribute…

A Phase 3 clinical trial in idiopathic pulmonary fibrosis (IPF) patients will be a top clinical development priority for Prometic Life Sciences in 2018, the company announced. The realignment of the company’s research priorities follows a meeting held with the U.S. Food and Drug Administration (FDA) in January 2018.