I have a problem with inertia. The forces that get my engine firing seem to start late, work slowly, and then combust and burn all at once. It’s a long fuse to a full gas tank. Forget the spark plugs and the carburetor. Whether it is…
The Courage Crew Is Running for Rare Disease Day
For Rare Disease Day this Feb. 28, the Pulmonary Fibrosis Foundation (PFF) wants to raise public awareness of pulmonary fibrosis (PF), its symptoms and the importance of an early diagnosis. “The PFF is committed to providing quality disease education for the PF community,” Joyce S. Lee, senior medical advisor for…
Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned how to turn those trials into triumphs. At age 9, a stroke due to his disease left him paralyzed…
We talk a lot about the importance of finding and maintaining hope in the rare disease community. While I agree this is important, I also want to acknowledge it isn’t always easy while living with idiopathic pulmonary fibrosis (IPF), a rare and life-threatening lung disease that eventually steals your ability…
I don’t know if humans will recover from this pandemic: the lack of touch, the resocializing to keep our distance, the physical isolation. I have dreams where I’m in groups of happy people touching … and those dreams are actually nightmares. My mom is a hugger.
Pretreatment with retinoic acid was found to stimulate the repair of damaged alveoli — the tiny air sacs in the lungs — in a mouse model of idiopathic pulmonary fibrosis (IPF) by upregulating a molecule called PDGFA. The researchers used an aged mouse model to simulate the lung…
A DNA sensor protein called STING was found to play an unexpected protective role in fibrosis development by regulating inflammatory immune responses in an induced idiopathic pulmonary fibrosis (IPF) mouse model, a study has discovered. The study, “…
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…
The University of South Florida (USF) received a $1 million donation to fund research focused on finding ways to detect and prevent lung tissue scarring in people with pulmonary fibrosis (PF). “This generous gift will help the University of South Florida advance innovative testing and treatment of the toughest…
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…
