Community Voice Ad Hoc Group: Ineligibility/Nonuse for Approved CFTR Modulator Therapies

To support the Foundation’s efforts that focus on those who are ineligible for or unable to take 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

It is important to hear from everyone who does not currently benefit from these therapies, so please consider joining this group. If you would like to opt in, please complete the short interest survey below.

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* 1. First Name

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* 2. Last Name

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* 3. Primary Email Address

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* 4. Which of the following apply to you?
Please select all that apply.

I am personally living with cystic fibrosis

I am the parent of someone living with cystic fibrosis

I am a caregiver of someone living with cystic fibrosis

I am the spouse/partner of someone living with cystic fibrosis

I have an immediate family member living with cystic fibrosis

Other (please specify)

25% of survey complete.

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* 1. First Name

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* 2. Last Name

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* 3. Primary Email Address

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* 4. Which of the following apply to you?Please select all that apply.

* 4. Which of the following apply to you?
Please select all that apply.