A new law that allows patients with rare diseases to participate in clinical trials without losing eligibility for public health care benefits went into effect yesterday. The bill, known as the “Improving Access to Clinical Trials Act” (IACT), was championed by the Cystic Fibrosis Foundation and signed into law in October 2010.
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While I’ve had the incredible opportunity to participate in clinical trials for cystic fibrosis, my nonsense mutations mean I can’t benefit from modulators. I was inspired by the North American Cystic Fibrosis Conference’s second plenary session, which discussed how we can evolve clinical trials to develop treatments for all people with CF.
One of the reasons I decided to attend boarding school was to take charge of my cystic fibrosis care. Although I’m not perfect at taking care of myself, I learned that the importance of staying on top of treatments when my parents gave me the chance to fail.
Once your
Choosing to volunteer in a
My school gave students a choice of how they want to go back to school: virtually or in person. After considering what made sense for my CF, learning style, and mental health, I decided to attend school in person.
When my university first shut down in March because of COVID-19, I thought our quarantine would be temporary. Now I am contemplating a fully online fall semester. I'm calling on all colleges to continue to accommodate the needs of their high-risk students.
There have never been as many new CF drugs in development as there are today. In the second plenary at NACFC, Dr. George Retsch-Bogart outlined the progress we've made, the road ahead and the changes needed to make it all possible. Read on for my key takeaways.
Annoying though it may have been for me, my mom was determined to raise a daughter who was healthy despite CF. However, we would both soon realize that not every symptom is visible.
Clinical trials that test potential drugs and therapies in people with cystic fibrosis are a major part of CF research. They take place at Cystic Fibrosis Foundation-accredited care centers all over the United States and enroll people with CF of all ages.