Survey Opportunity: Models of Post-Transplant Care Survey
CFF Community Voice issued a call for survey participation regarding post-transplant care. Here is their announcement. In partnership with the CF Foundation, an international group of CF and transplant clinicians […]
CFFC Facebook Posts – October 2020 – Part 2
10/16/2020 – Tobacco Smoke Exposure Limits Symdeko Benefit in Pediatric CF Patients – We know that second-hand smoke is harmful to those living with CF. This study indicates that smoke […]
Spreading Holiday Cheer
CFFC’s core mission is to support the local CF community. That means emotional support as well as financial support. With the COVID protocols, people living with CF may feel even […]
Clinical Trial Alerts – October 2020
Cystic Fibrosis Foundation issued the following clinical trial alerts in October. October 15, 2020 Study of VX-445 triple combination in children 6-11 years old with cystic fibrosis Status: Completed with […]
CFFC Facebook Posts – October 2020 – Part 1
10/01/2020 – What Are Your Remaining Medical Needs Post-Trikafta? – Gunnar Esiason gives us reality check in the euphoria associated with the success of CFTR modulators. And he is asking […]
CFFC Facebook Posts – September 2020 – Part 2
09/16/2020 – Researchers discover a specific brain circuit damaged by social isolation during childhood – While this article is geared toward the isolation associated with the COVID-19 response, you can […]
Clinical Trial Alerts – September 2020
Cystic Fibrosis Foundation issued the following clinical trial alerts in the month of September. September 8, 2020 Study to evaluate the effects of CFTR modulators in infants and young children […]
Pain and Symptom Management Survey
Cystic Fibrosis Foundation is seeking input on issues relating to pain ans symptom management. Here is their announcement. In preparation for the upcoming Palliative Care: Pain and Symptom Management Guidelines, […]
Vote Safely in 2020
In recognition of the policy issues that may have a significant impact on the CF community, Cystic Fibrosis Foundation is offering information on those issues as well as guidance avoiding […]
CF Foundation October Events
Cystic Fibrosis Foundation is sponsoring several events in October. The Western New York Chapter provided the following details. Each event is also listed on the CFFC calendar. Oct 2, all […]