Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: My Temporary Foray into the Visible Realm of an Invisible Illness 31 Days of CF: Gemma’s Story Avoiding the Pitfalls of Information Overload Eurordis Unveils Integrated-care Initiative for Rare Disease Patients Snail Slime May Lead to New CF Treatments Because of Its Antimicrobial Proteins 31 Days of CF: Gillian’s Story My Temporary Foray into the Visible Realm of an Invisible Illness Jun 21, 2019 09:00 am | Elizabeth Rogers Cystic fibrosis is, for the most part, considered an invisible illness. Shortness of breath isn’t visible. Pain in our joints and the discomfort of digestive issues may show on our faces, but those symptoms aren’t represented by the aids and devices typically associated with disability or disease. While there are advantages and disadvantages to this […] The post My Temporary Foray into the Visible Realm of an Invisible Illness appeared first on Cystic Fibrosis News Today. Read More 31 Days of CF: Gemma’s Story Jun 20, 2019 12:00 pm | Luisa Palazola   View this post on Instagram   Day 9 of 31 Days of CF⁣⁣ Topic: Medicinal Marijuana ⁣⁣ ⁣⁣ We asked @gem.mcl to share her experiences: ⁣⁣ ⁣⁣ I go to college in Durango, CO, where I study theatre, singing, and creative writing. Because marijuana is legal where I live, I have had the opportunity […] The post 31 Days of CF: Gemma’s Story appeared first on Cystic Fibrosis News Today. Read More Avoiding the Pitfalls of Information Overload Jun 20, 2019 09:00 am | Elly Aylwin-Foster This time last week, aided by copious amounts of coffee, I was putting the finishing touches on a presentation I would deliver the next day in Berlin. I was speaking at the Medical Affairs Summit, an annual gathering of medical affairs professionals within the pharmaceutical industry. The medical affairs function is made up of scientists […] The post Avoiding the Pitfalls of Information Overload appeared first on Cystic Fibrosis News Today. Read More Eurordis Unveils Integrated-care Initiative for Rare Disease Patients Jun 20, 2019 08:30 am | Hal Foster Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic, integrated-care approach by 2030. The payoff […] The post Eurordis Unveils Integrated-care Initiative for Rare Disease Patients appeared first on Cystic Fibrosis News Today. Read More Snail Slime May Lead to New CF Treatments Because of Its Antimicrobial Proteins Jun 20, 2019 07:00 am | Joana Carvalho Small proteins with antimicrobial properties found in the mucus of the brown garden snail may open the door to the development of new treatments for patients with cystic fibrosis (CF) who often experience lung infections caused by the bacteria Pseudomonas aeruginosa, a study says. The findings of the study, “Identification and characterisation of anti-Pseudomonas aeruginosa […] The post Snail Slime May Lead to New CF Treatments Because of Its Antimicrobial Proteinsappeared first on Cystic Fibrosis News Today. Read More 31 Days of CF: Gillian’s Story Jun 19, 2019 12:00 pm | Luisa Palazola View this post on Instagram Day 10 of 31 Days of CF ⁣⁣⁣ Topic: Empowerment in motherhood and pregnancy⁣ ⁣ We asked @gillianmocek to share her experiences: ⁣⁣⁣ ⁣ —⁣ ⁣⁣⁣ I have learned so much about my body the past 27 years I have lived with CF. The coolest lesson was becoming a mom.⁣⁣⁣ […] The post 31 Days of CF: Gillian’s Story appeared first on Cystic Fibrosis News Today. Read More   Recent News 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