With the U.S. midterm elections now less than two weeks away, patient advocacy groups are solidly focused on a range of hot-button issues, from the Orphan Drug Tax Creditand affordable health insurance to future funding for rare disease research. Yet “whether Democrats take over the House or Senate, or…
#NORDSummit – Major Issues on Table for Rare Disease Patients in US as Midterm Elections Approach
East River BioSolutions has received a $224,566 grant from the National Heart, Lung, and Blood Institute of the National Institutes of Health (NIH) to advance the development of laboratory tools that can aid in the study of idiopathic pulmonary fibrosis (IPF). Development of effective therapies for IPF…
A mutation associated with the mucous-producing gene MUC5B, a known genetic risk factor for idiopathic pulmonary fibrosis (IPF), also is prevalent in rheumatoid arthritis patients with interstitial lung disease (ILD), according to a study led by researchers from the University of Colorado School of Medicine. The study, “MUC5B Promoter…
One of my all-time favorite quotes about kindness is: “Everyone you meet is fighting a battle you know nothing about. Be Kind. Always.” I liked this quote, which can be traced to Scottish author Ian Maclaren, before my 2016 diagnosis of idiopathic pulmonary fibrosis (IPF). Kindness should…
Mesenchymal stem cells derived from the bone marrow of people with idiopathic pulmonary fibrosis (IPF) perform basic cell functions, like growing and dividing, more poorly than do these cells from healthy people of the same age, a study reports. The study, “Senescence of bone marrow-derived mesenchymal stem cells from…
As PF progresses, it is wise to address how long to keep working. It is common to wonder: How do I know when to stop? When is work harmful to my health? Can I make it financially? How do I obtain disability or early retirement? These are…
The Pulmonary Fibrosis Foundation (PFF) is now accepting applications for a new program, called PFF Scholars, that aims to support and further develop promising researchers working in the field of pulmonary fibrosis (PF). The PFF Scholars program was designed to provide emerging researchers with financial resources to conduct or…
I have noticed a difference in myself over the past few months. I believe this new attitude is beneficial for my physical, mental, and emotional health. I have been prioritizing my needs and not feeling guilty about doing so. I encourage everyone to live and work this way,…
The Pulmonary Fibrosis Foundation (PFF) created an educational website to increase awareness about this disease, with a goal of promoting earlier diagnosis among pulmonary fibrosis (PF) patients. The website includes a video explaining the disease and outlining possible causes, stories from people with the disease, and offers a downloadable Pulmonary Fibrosis…
Living with any life-threatening illness is difficult and brings many changes, both to the patient and her family. Following my diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016, my doctor talked about the physical changes I should expect. What the doctor didn’t mention were the other —…
