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Stay connected to the Cystic Fibrosis Foundation! Follow along in our relentless pursuit of a cure for CF on social media and email.
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Cystic Fibrosis Foundation
20.7K posts
Cystic Fibrosis Foundation
@CF_Foundation
Recognized globally, the CF Foundation has led the way in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress.
Headquarters in Bethesda, MD Katılım Temmuz 2009
2.5K Takip Edilen30K Takipçiler
@HicksRhena Way to go, Simba! So glad you joined us for Great Strides!
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It's a beautiful morning to #fightcf with the @CF_Foundation! Simba is sporting his best CFF swag at the Hampton Roads #GreatStrides! #fightforacure
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Hi,
Thank you for your question. We are sorry to hear that you are having difficulty finding enzymes. If you haven't already, you can reach out to CF Foundation Compass and a case manager may be able connect you to enzymes in your area. You can contact Compass by phone at 844-COMPASS (844-266-7277) or by email at compass@cff.org. Compass is available Monday through Thursday, 9:00 am – 7:00 pm EST and Friday, 9:00 am – 5:00 pm EST.
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The @US_FDA has approved the expansion of Trikafta to additional people with #cysticfibrosis ages 2 and older who have certain rare mutations. on.cff.org/4iMlQn8
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@AArdent666 Alyftrek comes with a boxed warning on the risk of liver injury and liver failure. Individuals interested in taking Alyftrek should speak with their care team with any questions or concerns.
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@CF_Foundation @US_FDA Is there any research about Alyftrek and its effects on the liver yet? I've only been able to take half a dose of Trikafta since it caused problems with my liver levels according to my labs.
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Alyftrek, a new, once-a-day CFTR modulator for people with cystic fibrosis has been approved by the @US_FDA.
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Thank you, @SenatorShaheen, @SenatorBaldwin, and @RepUnderwood for championing the Health Care Affordability Act, a bill making premium tax credits permanent for those insured through the marketplace and ensuring that health care is accessible and affordable for all. #CFAdvocacy
Sen. Jeanne Shaheen@SenatorShaheen
Proud to introduce my Health Care Affordability Act as my first bill of the 119th Congress. Families are already struggling to make ends meet and allowing the Affordable Care Act premium tax credits to expire would make health care costs skyrocket. Let’s get this done.
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@US_FDA Read the news story and learn which rare mutations may now be eligible for Trikafta.
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@US_FDA We know that between 10–15% of people with CF are not eligible for or cannot tolerate modulators. We are committed to ensuring everyone will have a treatment for the underlying cause of their cystic fibrosis, and ultimately, a cure.
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@US_FDA Read the news story about the approval of Alyftrek, including the rare mutations of the CFTR gene that have been approved for Alyftrek. on.cff.org/4grYd1C
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@US_FDA Because the Foundation is aware of published reports of mental and cognitive side effects of people with CF on Trikafta, it is funding a study in development that will examine mental health and cognitive function of people with CF who start Alyftrek.
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We are committed to pursuing a transformative treatment for all people with #cysticfibrosis, especially those who can’t take CFTR modulators. on.cff.org/3YXxkLw
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First, the lab research will target the correction of a nonsense mutation. Other rare mutations that are not eligible for CFTR modulators will be explored later.
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We have agreed to invest up to $15 million in ReCode Therapeutics to fund the development of a gene editing therapy that is designed to use ReCode’s delivery system to transport gene editing cargo to the lung cells in people with #cysticfibrosis.
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Thank you, @SenKatieBritt, for meeting with Miss Alabama, Abbie Stockard, to learn about her best friend who lives with cystic fibrosis and discuss the needs of the CF community. We hope we can count on your leadership and vocal support to pass the PASTEUR Act this year!
Senator Katie Boyd Britt@SenKatieBritt
Wonderful meeting Miss Alabama today to discuss her powerful advocacy for those living with cystic fibrosis. Her dedication to raising awareness and supporting research gives hope to so many families across our state.
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@CarsNQ Amazing! Together, we can make CF stand for Cure Found. 💜
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We are absolutely blown away by the support of our Cars & 'Q family, with a record-breaking $724,144 raised for the @CF_Foundation at this year's show. Through your support, our show has reached a lifetime total of $4.5 million raised to cure cystic fibrosis.
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