Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest.    Two entries in November’s “Disorder: The Rare Disease Film Festival” will focus on what siblings go through, according to the San Francisco festival’s co-founder,…

On Independence Day, I found myself alone, drunk, and crying. Every other person at the small party had adjourned to the parking lot to smoke. I have always had a problem with smoking. The first fight my husband, Jonny, and I ever had was when I found out that he…

Patients who take either Esbriet (pirfenidone, sold by Genentech) or Ofev (nintedanib, by Boehringer Ingelheim) — two anti-fibrotic therapies approved to treat idiopathic pulmonary fibrosis — often experience significant gastrointestinal side effects, a Dutch study shows. The study, “Self-reported Gastrointestinal Side Effects of Antifibrotic Drugs in…

Over a month ago, I returned from a three-week vacation to Europe. My wife and I were active every day of the trip. Most of our physical activity consisted of walking, but we also went swimming when we had the opportunity. We established a routine in each country we…

Do you ever wonder what your bigger picture looks like and what life lessons you’re meant to learn? I am aware that this is a very philosophical question to open a column with, but I can’t help but wonder about it after being diagnosed with a fatal lung disease. Since…

Developing gene therapies for rare diseases is one thing. Creating gene-edited “designer babies” is quite another. German legal expert Timo Minssen outlined the potentially explosive ethical landmines surrounding such issues during a recent talk at the New York Genome Center. Minssen directs the Center for Advanced Studies in…

Efforts to optimize treatments to address critical challenges in treating idiopathic pulmonary fibrosis (IPF) has been given a boost by a more than CA$670,000 grant to support a collaborative project between Ceapro and academic researchers at McMaster…

Men who are active smokers and experience faster respiratory decline when diagnosed with idiopathic pulmonary fibrosis (IPF) are at greater risk to develop lung cancer, according to a study. Clinicians should be aware of this risk pattern in order to detect and treat lung cancer early in IPF patients, as…

Online forums have markedly altered how patients, caregivers, and healthcare professionals communicate and connect. Even when miles apart, individuals can establish supportive relationships, share experiences and information, and sometimes simply vent. Bionews Services, a leading online health, science, and research publication company, has been introducing its own…

Last week, I talked about how caring for my mother, Holly, before and after her double-lung transplant helped prepare me for parenthood. As an only child, I hadn’t yet had the opportunity to care for someone in such a comprehensive way. I learned a lot about myself and how…