Cystic Fibrosis Research, Inc.

PATIENT ASSISTANCE PROGRAMS PROVIDE NEEDED SUPPORT. Please see the Patient Assistance Programs on our website for information on many programs from our partners, including Genentech, Vertex, AbbVie, Chiesi USA, Viatris, and RespirTech. For more information, go to https://cfri.org/cf-patient-assistance-programs/

RARE STARTING SUNDAY FEBRUARY 28! Rare Disease Day is Sunday, February 28th, and CFRI is honored to be part of "24 Hours of Rare: A Global Celebration." This event kicks off Sunday February 28, with stops around the globe, time zone by time zone, to hear about the work being done by rare advocates, patients, medical professionals, and researchers around the world. Siri Vaeth, CFRI's executive director, will participate live at 12:00 pm (Noon) Pacific Time. The fun continues throughout the week, with a five-day series of panels, breakouts, workshops, and networking sessions. Come visit CFRI in the virtual exhibit hall! To register for this free event, go to: https://24hoursofrare.com/register-now.

STILL SHELTERING IN PLACE? SHOP AMAZON SMILE AND SUPPORT CFRI! A percentage of every purchase you make on AmazonSmile goes to CFRI with no effort or cost to you! It really works we receive steady contributions and hope they will grow. Please remember that the URL must be the SMILE.amazon address, and you must select CFRI as your charity of choice. To go to Amazon Smile, visit https://smile.amazon.com/gp/chpf/homepage?orig=%2F

FINANCIAL ADVOCACY IN RARE: NAVIGATING THE U.S. HEALTH SYSTEM FOR YOUNG ADULTS. If you have a rare disease, there are some extra challenges to think about in the transition to adulthood. Whether you are heading to college, into the workforce, or living at home with parents, you’ll need to know how to get health insurance coverage, find healthcare providers who understand your needs, and advocate for yourself when you need care. Global Genes’ guide provides information and tool to help you have purposeful conversations with your family and care providers about care transitions. To download, go to https://globalgenes.happyfox.com//270-financial-advocacy-/

PRIORITIZATION OF THOSE WITH CYSTIC FIBROSIS FOR COVID-19 VACCINATION California has announced a shift to an age-based system for its residents to receive the COVID-19 vaccine. While the goal is to accelerate the vaccine process, it is very concerning that individuals living with serious chronic health conditions, including cystic fibrosis, may still have to wait months prior to receiving the vaccine. Currently those with CF are in Phase 1C. With the shift to age-based vaccin...ation eligibility, many with CF will be waiting for many months before they are eligible. The median age of death for those with CF was 31 last year. Making individuals with CF wait for months for a vaccine along with their healthier young peers could be catastrophic. Other communities have addressed this issue directly. In Washington DC, officials have created a specific list of diseases - including cystic fibrosis - and those with these conditions receive priority for the vaccine, ahead of the general population. By clicking on the link below, you can automatically send an email to California officials encouraging prioritization of those with cystic fibrosis and other life-threatening diseases, so as to allow earlier vaccinations. There is room for you to add your personal thoughts. Thank you for advocating for those living with cystic fibrosis. EMAIL: https://secure3.convio.net/cfri/site/Advocacy #cysticfibrosis #HighRiskCA #raredisease #chronicillness #chronicallyill #covid19vaccine #coronavirusvaccine #Tier1C #HighRiskCOVID19 #CFRI

RESEARCH EXAMINES CF PATIENTS’ SUSCEPTIBILITY TO COVID-19. A team of researchers at Boston University is launching a study to find out whether CF patients are more susceptible to COVID-19 infection and its more serious complications. While clinical data so far suggests that CF patients are not more susceptible than the general population, this may be attributed partly to a lack of information, because the CF community has been so effective at social distancing and mask wearing. To study how people with CF become infected and how they respond to the virus, the team is using a patient-derived, airway model of CF. To read more, go to https://answers.childrenshospital.org/cystic-fibrosis-covi/

COMBINATION OF LUMACAFTOR AND IVACAFTOR APPEARS SAFE AND WELL TOLERATED IN CHILDREN WITH F508del-CFTR MUTATION FOR CYSTIC FIBROSIS IN PHASE 3 TRIAL

2021 ATS FELLOWSHIP IN HEALTH EQUALITY APPLICATIONS ACCEPTED NOW. The American Thoracic Society offers this fellowship designed to support efforts to advance health equality for patients with respiratory disease, critical care illness or injury, and sleep disordered breathing. While proposals in any topic related to improving health equality are welcome, the ATS is particularly interested in receiving proposals in areas including U.S. Health Insurance and Health Disparities, and Pulmonary, Critical Care, and Sleep Training Programs and Health Disparities. Deadline to apply is March 12, 2021. For more information. go to https://www.thoracic.org///ats-fellows-health-equality.php

CDC ISSUES NEW GUIDANCE ENCOURAGING AMERICANS TO DOUBLE MASK OR IMPROVE THE FIT OF SURGICAL MASKS TO PROTECT THEMSELVES FROM MORE INFECTIOUS VARIANTS OF SARS-COV-2 To read CDC's recent report, please visit https://www.cdc.gov/mmwr/volumes/70/wr/mm7007e1.htm

CALIFORNIA RARE DISEASE COALITION: JOIN US! California Senate Bill 247 to create a California Rare Disease Advisory Council (RDAC) has been introduced by State Senator Susan Eggman. (Read the full bill below.) CFRI will soon share a fact sheet for those interested in supporting this vital legislation. Our next coalition meeting will take place in conjunction with California’s Rare Action Network Rare Disease Day Virtual Event on February 17 from 1-2:30pm PT.... REGISTER: https://rareaction.org/resources-for-advocates//california/ SB 247 FULL TEXT: https://leginfo.legislature.ca.gov/fa/billTextClient.xhtml

PATIENT ASSISTANCE PROGRAMS PROVIDE NEEDED SUPPORT For information on many programs from our partners, including Genentech, Vertex, AbbVie, Chiesi USA, Viatris, and RespirTech, go to: https://cfri.org/cf-patient-assistance-programs/ #cysticfibrosis #patientassistance