Following My Doctor’s Advice, I Didn’t Abandon My Life Goals

Social Media Advocacy Requires Radical Vulnerability

As a millennial, I came of age with the internet. I remember the thrill of choosing the perfect screen name for AOL Instant Messenger before going to camp. (luv4pigs31, if you were wondering.) In eighth grade, I created my first social media account. Back in the early 2000s, Myspace was…

Ofev for PF-ILD Now Reimbursed in 7 regions of Canada

Ofev (nintedanib), a medicine approved to treat progressive fibrosing interstitial lung disease (PF-ILD), now is available for public reimbursement in Ontario, Quebec, New Brunswick, Newfoundland and Labrador, Alberta, and the Northwest Territories. The therapy also will be reimbursed through the Non-Insured Health Benefits (NIHB) program, which provides eligible First…

Not All Heroes Wear Capes

You see them before and after you see a doctor. They are often the first person you see upon waking from anesthesia. They hold your hand during the difficult part of a procedure. They see you at your weakest state and help return you to health. Sadly, in some cases,…

Organizations Rally to Help Ukrainian Rare Disease Patients

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…