Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.
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Navigating school can be challenging when you have cystic fibrosis. The following tips can help parents and students feel prepared for a productive school year.
My daughter, Desi, recently started school. Here's what we did to prepare her to manage her cystic fibrosis and navigate the COVID-19 pandemic — and what we learned in the process.
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.
The Cystic Fibrosis Foundation's successful business model was at the center of a congressional briefing in Washington, D.C., today, which focused on strategies for jump-starting drug development for rare diseases.