Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: UK’s Cystic Fibrosis Trust Urges Participation in ‘Wear Yellow Day’ June 21 31 Days of CF: Tiffany’s Story Kalydeco Shows Long-term Efficacy in CF Patients in Real-world Setting 31 Days of CF: Kate’s Story ‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy UK’s Cystic Fibrosis Trust Urges Participation in ‘Wear Yellow Day’ June 21 Jun 19, 2019 07:00 am | Mary Chapman If the Cystic Fibrosis Trust (CFT) has its way, the United Kingdom will be awash in yellow on June 21. On that day, the nonprofit organization is asking patients and supporters to don yellow — hopefully while fundraising — to symbolize a brighter future for those with the progressive inherited lung disease. The annual Wear Yellow Day […] The post UK’s Cystic Fibrosis Trust Urges Participation in ‘Wear Yellow Day’ June 21 appeared first on Cystic Fibrosis News Today. Read More 31 Days of CF: Tiffany’s Story Jun 18, 2019 12:00 pm | Luisa Palazola View this post on Instagram Day 12 of 31 Days of CF⁣ Topic: Recieving a CF diagnosis, being a mom to a child with CF ⁣ ⁣ ⁣ As a parent receiving a diagnosis that your son has CF was challenging to no end! It was devastating and emotionally very difficult to accept a disease […] The post 31 Days of CF: Tiffany’s Story appeared first on Cystic Fibrosis News Today. Read More Kalydeco Shows Long-term Efficacy in CF Patients in Real-world Setting Jun 18, 2019 07:00 am | Alejandra Viviescas Kalydeco (ivacaftor) preserved lung function, improved the nutritional status, and reduced hospital visits and chronic bacterial infections in people with cystic fibrosis (CF) when administered for up to five years in a clinical setting, a long-term, real-world, observational study showed. The study, “Disease progression in patients with cystic fibrosis treated with ivacaftor: Data from national US […] The post Kalydeco Shows Long-term Efficacy in CF Patients in Real-world Setting appeared first on Cystic Fibrosis News Today. Read More 31 Days of CF: Kate’s Story Jun 17, 2019 12:00 pm | Luisa Palazola View this post on Instagram Day 13 of 31 Days of CF ⁣ Topic: Opening up about CF ⁣ ⁣ I’m Kate Eveling, and I’m 25 years old. I’ll get straight to the point, growing up I would always hide my cystic fibrosis from people especially at school. ⁣I was so scared that I would […] The post 31 Days of CF: Kate’s Story appeared first on Cystic Fibrosis News Today. Read More ‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy Jun 17, 2019 10:00 am | Hal Foster People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the rare-disease community help them decide […] The post ‘Rare Barometer’ Program Helps Eurordis Shape EU Rare Disease Policy appeared first on Cystic Fibrosis News Today. Read More   Recent News How to Overcome the Scourge of Confirmation Bias Eluforsen Found to be Safe for Adults with Cystic Fibrosis Caused by F508del Mutation, Study Reports 31 Days of CF: Steven’s Story 31 Days of CF: Maddie’s Story 31 Days of CF: Jenny’s Story