UNC Adult Cystic Fibrosis Center

10/25/2024

It is open enrollment for health insurance for many right now. If you have CF and are wondering what the best coverage is for you, consider using COMPASS - a service provided by the CF Foundation to provide one on one advice during this decision making process. See below, from the CFF:

COMPASS
One-on-one assistance for health insurance open enrollment: Even if your patients plan to keep the same coverage for 2025, it is important to assess whether there are unexpected changes that may impact them. CF Foundation Compass is a service that provides personalized side-by-side plan comparisons to review 2025 coverage options. Compass case managers can explain 2025 Medicare updates, answer coverage questions, research insurance coverage options, and investigate the costs of visits, services, medications, and more. You can refer your patients to Compass at 844-COMPASS, email, or the online service request form. Care teams can contact Compass directly for assistance as well. For questions, contact Jessica Fraser.

06/28/2024

Latest update on expected survival for people with cystic fibrosis from the 2023 patient registry:

Incredible progress.

04/26/2024

ResearchCon is coming for the CF community!

When: April 30 – May 1
Who: People with CF, family members, clinicians and researchers can gain more information about CF science, research, and care.

Topics:
-Participating in Clinical Research.
-Understanding the Complexities of Liver Disease and CF.
-The Effects of Modulator Therapies on Pregnancy and Reproductive Health.
-Psychological Interventions for Pain Management Roundtable Discussion.

Check out the link below for a flyer with QR code to register.

02/29/2024

The Cystic Fibrosis Foundation wants to hear from care teams, people with CF, and caregivers who are U.S. residents to help us understand the costs of life with CF. We'd like your help in both taking the research survey and asking your patients and their families to share their thoughts and experiences with the costs of CF care with the CF Foundation. We value diverse perspectives and would love to hear from as many of your colleagues and patients as possible.

We particularly want to hear from those who are Black, not on modulators, on Medicaid, and who have more advanced lung disease to get many different perspectives and a pool of respondents that reflects the full diversity of people with CF.

The survey takes about 15 minutes and is open until April 28.

Take this survey to understand how the costs of cystic fibrosis (CF) care affect access to healthcare services and daily living, and how CF care teams identify and address financial needs among people with CF and their families or caregivers.

02/14/2024

Results from a new "triple" option announced....

Findings from three Phase 3 trials of a new Vertex modulator, vanzacaftor, tezacaftor and deutivacaftor, are expected in the coming months.

02/14/2024

12/05/2023

Want to hear the latest research and care news from the North American CF Conference?? Join this live, moderated presentation Dec 5 at 7pm.

Have a question following this year’s North American Cystic Fibrosis Conference? We’ve got answers. Join us December 5 at 7 p.m. ET for a live community question-and-answer session with Anna Georgiopoulos, MD, and Traci Kazmerski, MD, moderated by Nicole Kohr, an adult living with cystic fibrosis.

Save your seat: https://on.cff.org/NACFC-2023-Q-A

10/12/2023

Join the NACFC Research Highlights, provided by the CF Education Workshops to CF parents, caregivers, and individuals living with CF. Dr. Charles Esther from the UNC Children's Research Institute will provide this exciting update.

When: Thursday, November 30, 2023 7-8:30 pm EST

Zoom meeting:
https://us02web.zoom.us/j/5422728693?pwd=RlZrdzArYjhkNEF5Q3c5cEpuSE1KZz09

RSVP here: http://cfparenteducation.com/workshops'
If you have questions, please email cfparenteducationgroup@gmail.com

Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom Rooms is the original software-based conference room solution used around the world in board, confer...

09/11/2023

Sometimes you just need to speak to someone who has been in your shoes. CF Peer Connect is a free one-to-one peer support program for people with CF and their families ages 16 and older. No matter what you are going through, there is someone who has been through a similar experience. Join us as the CF Peer Connect Team from the Cystic Fibrosis Foundation shares how they can match you with an adult with CF or family member to talk about CF-related challenges or just day-to-day life with CF.

Upcoming meeting 9/14/23 7pm
Please use the link provided here to register.
https://nam12.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.cfparenteducation.com%2F&data=05%7C01%7C%7Cc9e1b60349d24e45f82508dbafd2713f%7C58b3d54f16c942d3af081fcabd095666%7C1%7C0%7C638297090615549993%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=kD2nPondpQSmAAYMbOL92s6pCPMF6tVe%2BxXL7VeErdg%3D&reserved=0

No matter where you are in life — whether you’re a person with CF, parent, or caregiver — CF Peer Connect can connect you to a peer who has been through a similar situation.

04/26/2023

Another amazing milestone - bringing a life changing therapy to very young kids with. Congratulations to study principal investigator, our UNC colleague Dr. Jennifer Goralski!

With this approval, approximately 2,250 children in the U.S. will be eligible for Trikafta® (elexacaftor/tezacaftor/ivacaftor), including more than 900 who will have access to a CFTR modulator for the first time. The Cystic Fibrosis Foundation believes it is beneficial to start people with cystic f...

06/22/2022

The Cystic Fibrosis Foundation is conducting a survey about the health-related needs and quality of life of people with CF and would like you to participate if you are a person with CF over the age of 18 or a parent of a child with CF. The Foundation is performing a study to better understand changes people with CF are experiencing not only in their physical care and symptoms, but also in their personal lives including their emotional, social, and financial well-being. This survey will be used to describe the needs of the community, including both people taking and not taking modulator therapies. Please complete this survey by July 31, 2022. Results will inform future CF care and research.

Click the link below to take the Wellness in the Modulator Era Survey.
https://t.e2ma.net/click/3o6tth/n8m35y/730m9u

The survey should take approximately 10-15 minutes to complete. Individuals who complete the survey will have the option to submit their e-mail address to be entered in a random drawing for a $25 Amazon gift card. Email addresses will never be sold or shared or attached to survey responses.

03/21/2022

Registration for ResearchCon is OPEN!!! Sign up and attend to hear about the latest in cystic fibrosis science, research, and care.

Do you want to know more about cystic fibrosis research, science, and care? Join me at ResearchCon April 7 and 9 to connect with researchers, clinicians, and members of the CF community about the topics that matter most to you, and have an opportunity to ask your questions directly to the experts.