Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…
Eurordis Unveils Integrated-care Initiative for Rare Disease Patients
Treatment with Esbriet (pirfenidone) slows the worsening of breathlessness in patients with more severe idiopathic pulmonary fibrosis (IPF), a post-hoc analysis of the ASCEND and CAPACITY trials shows. The study, “Effect of pirfenidone on breathlessness in patients with idiopathic pulmonary fibrosis,” was published in the European…
Note: This is the second article in a three-part series written in collaboration with respiratory therapist Mark W. Mangus Sr., RRT, RPFT, FAARC, and oxygen expert Ryan Diesem. The first part can be found here. When it comes to home improvement, people typically want three things from a contractor:…
The presence of auto-antibodies (self-directed antibodies) known as antineutrophil cytoplasmic antibodies do not correlate with disease severity or survival in North American patients with idiopathic pulmonary fibrosis (IPF), according to a new study. The study, “Prevalence and Clinical Significance of Antineutrophil Cytoplasmic Antibodies in North American Patients with…
People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the…
Idiopathic pulmonary fibrosis (IPF) has many pesky side effects. While many are invisible, such as dizziness, muscle pain, and shortness of breath, some are visible, like the chronic cough that accompanies this life-threatening lung disease. Sometimes, patients with IPF experience a productive cough and are able to move…
Key pharmaceutical and academic leaders in idiopathic pulmonary fibrosis (IPF) will gather at the Third Annual IPF Summit in San Diego to discuss the latest developments in the field. The conference, taking place Aug. 27-29, aims to create a discussion and networking environment to overcome the translational gap…
In the age of social media, many people seem to have forgotten what healthy boundaries are. If you use Facebook, for example, you may notice that some people overshare — whether it’s 200 pictures of their trip to the beach or details of their child’s bowel movements, they demonstrate little…
The use of oxygen at rest is associated with a greater likelihood of death or lung transplant in people with idiopathic pulmonary fibrosis (IPF), a study shows. The results also showed that lower lung function at the start of the study, as measured by tests like forced vital…
Monday, June 3 was a difficult day for the pulmonary fibrosis (PF) community. An advocate, colleague, and friend passed away from complications of PF, but even in her death, Kim Fredrickson will continue to inspire many living with this life-threatening lung disease. While her loss is felt deeply in…
