Bionews Staff, writers and editors —

Photo courtesy of Jenny Humphries Day 9 of 31 This is Jenny Humphries’ story: I’ve always been a planner. I don’t make a purchase without researching every possible option. If I’m going on a trip, you better believe I have a detailed itinerary with pictures and multiple backup plans.

Stephanie Stavros, her son Grey, and husband, Jim (Courtesy of Stephanie Stavros) Day 8 of 31 This is Stephanie Stavros’s story: It’s been my experience that living with cystic fibrosis (CF) requires that you prioritize your mental health just as much as your physical health.

From left, Winry and Cheyenne Sowder. Photo courtesy of Winry Sowder Day 7 of 31 This is Cheyenne and Winry Sowder’s (@thetinyrose) story: In 2016, at just 21 days old, my daughter, Winry, was finally diagnosed with cystic fibrosis after weeks of unanswered questions…

Photo courtesy of Amber Dawkins Day 5 of 31 This is Amber Dawkins’ story: There are 182 pills, neatly organized in a plastic container, the days of the week labeled in bold on each of the small sections. Just enough medication to last for seven days. Inhalers, nebulizers, airway…

Photo courtesy of Jen Kyle Day 4 of 31 This is Jen Kyle’s story: When I was diagnosed at age 37, I was at the height of my teaching career and newly married. It was a blow at first, learning new meds and routines along with learning…

Photo courtesy of Wes Hawkins Day 3 of 31: This is Wes Hawkins’ story: “You can control the disease, or you can let the disease control you.” Powerful words that my cystic fibrosis specialist told my parents when I was diagnosed at 3 years old. Words my parents…

Photo courtesy of Jamie Rudnycky Day 2 of 31 This is Jamie Rudnycky’s story: Cystic fibrosis (CF) is unique to our family in that we had a life with our child before the disease appeared. We spent Louisa’s first 18 months living life without enzymes, nebulizers,…

Healthcare providers involved in diagnosing and treating rare diseases believe that increased physician education and collaboration with specialized facilities will have the greatest positive impact on treating these conditions over the next five years, according to results from a 2021 survey. Definitive Healthcare, a healthcare commercial intelligence company, conducted…

Global Genes has partnered with the Rare Disease Diversity Coalition (RDDC) to advance health equity for rare disease patients and caregivers in underrepresented communities of color. “For rare disease patients, there are many challenges — and for people of color with a rare disease, these challenges are compounded…

The Rare Disease Diversity Coalition (RDDC) awarded $600,000 in grants to ease the disparities faced by rare disease patients of color. These Impact Rare Disease Solution grants will go five RDDC steering committee working groups, which aim to identify problems for rare disease communities and advocate for solutions. The five…