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…
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.
In the past, I thought anxiety entailed someone feeling upset, worried, or nervous. I thought it was situation-based, meaning something triggered it. And I thought anxiety usually manifested in a physical way that was visible to others, such as crying, shaking, sweating, or fidgeting. The older I get, the…
PMD Healthcare is creating advisory boards composed of pulmonary fibrosis and cystic fibrosis patients and caregivers. The company, whose services include remote monitoring of patients’ health conditions, is in the midst of recruiting members of both boards. PMD said the purpose of the boards is to gather information and opinions directly…
A rock-painting contest in Las Vegas. A fashion show in New York. A 7,000-meter race around the Washington Monument that’ll coincide with a similar #Racefor7 event in Bengaluru and Mumbai, India. From Athens to Atlanta, from San Diego to Sydney, people across the globe will mark World Rare Disease…
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