Lilia Zaharieva was a University of Victoria student in her early late twenties when she found herself losing half her leg function due to cystic fibrosis. Walking from class to…
Ninety years ago, when Sir Alexander Fleming discovered that bacteria left in a petri dish was killed by mold, a revolution in modern medicine began. Since 1928, penicillin and other…
Tasha Nelson's world turned upside down when her son, Jack, was diagnosed with cystic fibrosis (CF). Little did she know, this would turn her into the political advocate she is…
Even as we advance in science and medicine, human organs are still complicated and largely mysterious. They're affected by lots of external factors, changing with temperature, pH, and access to…
Happy Friday! We have some great news for the short bowel syndrome community. We also have info on a PBS doc you won't want to miss. One of our contributors…
Indianapolis is known for its speedway, but this weekend, scientists, physicians and advocates for advancements in cystic fibrosis (CF) therapies are gathering there for the 31st Annual North American Cystic…
Come to the 31st Annual NACFC and be among 5,000 attendees, exhibitors, supporters, and staff from around the globe to learn more and talk about everything cystic fibrosis! Find out your registration fees…
Cystic fibrosis while still rare, is one of the world’s most common genetic disorders. There are more than 30,000 people in the United States that live with cystic fibrosis. Patients…
Happy Pre-Halloween Patient Worthians! October is Dwarfism Awareness Month. Not only that, MDS World Awareness Day was just two days ago! Get the deets below. We also have a story…
Earlier this month, PBS released the "The Gene Doctors." The hour-long documentary follows the recent emergence of gene therapy as a novel method of treating rare diseases. The film discusses…
Forty is the beginning of middle age. I remember when my father turned 40; everything was decorated black. Black balloons. Black streamers. Black icing on the cake. Actually, it was…
Happy Friday Patient Worthians! This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more…
Date of issue: October 19, 2017 Boxing legend Michael Carruth was today firmly in Cystic Fibrosis Ireland's corner at Dublin's Irish Film Institute for the launch of a new awareness…
Happy Friday Patient Worthians! This week, we have an awesome story about PW Partner Avery's Angels. We also have a PW Contribution about key lessons everyone can learn from the…
Parenthood is one of the greatest joys for most people. But for Fanny Vlahos, a young Michigan woman, holding her infant son is nothing short of miraculous. Vlahos has cystic…
They look perfectly healthy. There's no outward sign of disease. But for millions of Americans, chronic and debilitating conditions such as idiopathic pulmonary fibrosis (IPF) could be lurking inside. October…
TGIF Patient Worthians! This week, we have two opportunities where you can spread some love. You can help a young boy with microcephaly and/or contribute to amyloidosis research. We also…
You will not often find me in the kitchen--a place that often plays a center role in the lives of families with cystic fibrosis. I have nothing against cooking—other than…
You’re used to seeing Santa at his workshop, at the mall, under your tree—but at an art exhibit? Well, for one Alaska teen living with cystic fibrosis (CF) that became a…
I hate to admit it, but when my Mom nagged me to eat lots of fruits and veggies, she was right. For most people, balanced nutrition helps keep our bodies…
There is a fungus among us. Imagine having cystic fibrosis and then ending up with a fungal lung infection. People who already have compromised lung health find it difficult to…
It's Fall "Y'all"! This week, we have PW Contribution from a man with CMT. We also have one on raising a child with rare disease. We also have good news…
Welcome back Patient Worthians! We are back this week from the 2017 Global Genes Rare Advocacy Summit. Did you attend? If so, what did you learn? Let us know here. This…
In Ancient Greece, you had to be part divine to be called a hero. Achilles' mother was Thetis, a rather minor goddess. Heracles’ father was a god you might have…
Recently, in a new BBC documentary, a new innovative device was featured that offers a unique and engaging way for people with cystic fibrosis to handle one of the challenges…
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