Two years after approving it, the 28-member European Union will begin enforcing its General Data Protection Regulation (GDPR) — a tough new law that aims to protect the EU’s 512 million citizens, including rare disease patients, from having their medical records misused, sold, or subject to extortion by hackers, third…
#ERDC2018 – New EU Law to Protect Patient Data Could Affect Rare Disease Registries
Treatment candidate GLPG1690 prevented lung function decline in a Phase 2 clinical trial of idiopathic pulmonary fibrosis (IPF) patients, Belgium-based Galapagos announced. The research, “Safety, tolerability, pharmacokinetics, and pharmacodynamics of GLPG1690, a novel autotaxin inhibitor, to treat idiopathic pulmonary fibrosis (FLORA): a phase 2a randomised…
I shared in a recent column that I’m going through testing for lung transplant consideration. It has been challenging, but I am grateful because I know many pulmonary fibrosis patients do not have this opportunity. Being poked and prodded is exhausting, stressful, and sometimes painful. But it…
At the 2nd Annual IPF Summit in San Francisco this summer, academic and biopharma experts in idiopathic pulmonary fibrosis (IPF) will again gather to discuss the latest developments in the field. Taking place Aug. 20-22, the conference aims to close the translational gap between preclinical data and clinical outcomes, a…
Having to deal with difficult days is inevitable for patients with idiopathic pulmonary fibrosis (IPF). The difficulty may be physical in nature, meaning our lungs cause us trouble. This complicates basic tasks such as taking a shower or getting dressed. Sometimes a medical appointment reveals bad news,…
Veracyte, a leading genomic diagnostics company, launched an Early Access Program to make its Envisia Genomic Classifier test available for idiopathic pulmonary fibrosis (IPF) patients, the company announced. Envisia Genomic Classifier was designed to improve the diagnosis of IPF and help ensure an appropriate treatment without requiring surgery. The…
The Pulmonary Fibrosis Foundation (PFF) has added 15 treatment sites to its nationwide Care Center Network (CCN) — including one each in Wisconsin and Iowa, states which previously did not have centers with recognized expertise in diagnosing and treating pulmonary fibrosis patients. “As the leading resource for the pulmonary fibrosis…
If you’re a social media user, you’ve likely had a laugh or two at the many different memes that circulate on Facebook or Instagram about life being difficult as an adult. My favorite, and one that always makes me laugh, is an image of a French bulldog lying…
The European Union isn’t doing enough to protect the 30 million or so people with rare diseases who live in its 28 member countries, officials meeting last week in Vienna said. More than 900 people from 58 nations attended the 9th European Conference on Rare Diseases & Orphan Drugs (ECRD),…
The National Organization for Rare Disorders (NORD) will celebrate the 35th anniversary of both the 1983 Orphan Drug Act and NORD’s founding at a dinner tonight in Washington, D.C. The 2018 Rare Impact Awards, to be held at the Andrew W. Mellon Auditorium, will be webcast via Facebook for those…
