Cystic Fibrosis Foundation is seeking to form an ad hoc group of individuals who are unable to take CFTR modulators. Here is the announcement from Community Voice:
To support the Foundation’s efforts that focus on those who are ineligible for or unable to benefit from approved (CFTR) modulator therapies, including ivacaftor (Kalydeco®), lumacaftor/ivacaftor (Orkambi®), tezacaftor/ivacaftor (Symdeko®), and elexacaftor/tezacaftor/ivacaftor (Trikafta™), the Community Voice team is forming an ad-hoc group to better understand the needs and experiences of these individuals and ensure representation of this perspective in all our work. As a part of this group, members will have the opportunity to share their insights and participate in various projects surrounding this topic.
We are looking for people with CF, parents of children with CF, and partners of people with CF who:
Have been diagnosed with nonsense or rare mutations and have not yet been approved to take a CFTR modulator therapy
Are not approved/taking CFTR modulators for any other reason
If you would like to opt into this group, please fill out the short interest survey by clicking on the button below. Also, It is important to hear from everyone who does not currently benefit from these therapies. Please feel free to share this opportunity with your social networks!
Thank you for your time and consideration. If you have any questions, please contact [email protected].