To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…
EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes
I had an epiphany last week: It’s hard to find a job! My first thought was that it must be my age. My experience doesn’t matter because I don’t fit into the work culture. (I’d never heard of “work culture” until I saw it on LinkedIn.) My second…
A radioactive molecule that can be seen on positron emission tomography (PET) scans may offer a non-invasive way to identify and monitor pulmonary fibrosis (PF), a study in mice reported. Further development of this radiotracer — which binds to activated fibroblasts in the lungs — could support its…
Thirona Bio has teamed with MannKind Corporation to develop and test a potential inhaled treatment for fibrotic lung diseases, including idiopathic pulmonary fibrosis (IPF). FBM5712, which Thirona is working to advance as a possible topical treatment of skin fibrosis, will be modified and investigated by MannKind for its…
The U.S. Food and Drug Administration (FDA) has accepted United Therapeutics’ application for a priority review of Tyvaso DPI, an experimental dry powder inhaled formulation of treprostinil, to treat pulmonary arterial hypertension (PAH) and pulmonary hypertension associated with interstitial lung disease (PH-ILD). …
Following my idiopathic pulmonary fibrosis (IPF) diagnosis in 2016, I had many fears. As an avid traveler, my No. 1 fear was being put on supplemental oxygen and losing the ability to fly. I also feared that using oxygen would prevent me from partaking in many of the outdoor…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
Scientists found that mesenchymal stromal cells (MSCs) — cells that have similar properties to stem cells — individually coated with a soft microgel were able to reverse established lung tissue scarring in a mouse model of pulmonary fibrosis. Their findings were reported in…
After my idiopathic pulmonary fibrosis (IPF) diagnosis, I was in denial about having the disease. So, I had a video-assisted thoracoscopic lung biopsy in July 2014. The pathologist said my diagnosis was “fibrosing and interstitial…
Nuformix announced it has received notice that it can expect to be granted a U.S. patent for its potential inhaled therapy for idiopathic pulmonary fibrosis (IPF). NXP002, the company’s lead pre-clinical asset, is a new formulation of tranilast, an antiallergic medication that is under investigation for its…
