TOPIC: NACFC 2022 Research Highlights: Update for CF Parents WORKSHOP DATE: Thursday, December 8, 2022 GUEST PRESENTER: Charles Esther, MD, PhD Hear the latest research and updates on CF from the 2022 North American Cystic Fibrosis Conference (NACFC). PRESENTATION RECORDING:
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TOPIC: Get the Respiratory Rundown with Duke University Respiratory Therapists. Presentation features useful information on therapies, devices, cleaning, and exercise/therapy. Including info on treatments while on Trikafta. DATE: Thursday, February 24, 2022 GUEST SPEAKERS: John Davidson & Kathe Neeley Duke University Respiratory Therapists Recording of Workshop Available Below: Product Information The below products were referenced in the workshop. Click the image for more information on the manufacturers website.
Enjoy the video presentation, and scroll below for links to recommended apps and websites to help you manage your medications! TOPIC: Managing the Medication Madness Learn tips for organizing and keeping track of medications, the various specialty pharmacies, and getting a system for refilling them so you can save time. Also, learn about programs for CF medications that offer nutritional supplements at no extra cost! DATE: Thursday, April 22, 2021 GUEST SPEAKERS: Clinical Pharmacists, UNC Chapel HillCameron McKinzie, Pharm.D. & Charissa Kam, Pharm.D. Video Recording of Workshop: CF Programs and Patient Assistance HFealthwell Foundation®
Creon® CareForward www.creon.com/cfcareforward Live2Thrive (Zenpep®) www.live2thrive.org Vivus Healthstore (Pancreaze) store.vivushealth.com Vertex GPS www.vertexgps.com Pulmozyme www.pulmozyme.com MedActionPlan medactionplan.com FREE APPS: MyMedSchedule medactionplan.com/mymedschedule Mango Health www.mangohealth.com Medisafe www.medisafeapp.com TOPIC: Infection Prevention 101: Discover healthy best practices for those with CF and their extended families! DATE: Thursday, February 25, 2021 GUEST SPEAKERS: Natalie Schnell, RN UNC Hospital Epidemiology Enjoy the video presentation, and scroll below for answers to questions and additional resources on infection prevention. Video Recording of Workshop Available: Q&A with Natalie What is the Efficacy of Norwex supplies & cleaning cloths with silver anti-microbial woven in?
How effective are neck gaiters?
Are there suggestions for low odor cleaning supplies?
How effective is UV light for disinfection?
Do you have suggestions for proper mask fit?
Summary graphics of recent mask efficacy data are below:
(click on image to enlarge) Many companies and organizations offer financial assistance to families with Cystic Fibrosis. Download this guide to help you understand the resources available and how to take advantage of these programs.
TOPIC:
CF Pharmacy Assistance Programs & Resources Medication Action Plans: Improving Adherence and Encouraging Medication Independence DATE: Tuesday, June 26, 2018 GUEST SPEAKERS: Cameron J. McKinzie, PharmD UNC Chapel Hill Tara Bell, PharmD Duke Clinical Pharmacist Practitioners, Pediatric Pulmonology |
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