The latest updates for September 29, 2022


([link removed])


CF Foundation Provides Updates on Newborn Screening Initiative

During Newborn Screening Awareness Month,
we continue to assess how cystic fibrosis newborn screening is conducted across the U.S. ([link removed])
and what opportunities there are to ensure that every infant born with CF, regardless of race, ethnicity, mutation, or location, has the best health outcomes possible.

Learn more » ([link removed])




Help Inform Future Virtual Conferences, Webinars, and More

We want to hear from you! The CF Foundation is conducting a survey to learn which areas of science, care, and life with cystic fibrosis that community members are most interested in learning about and discussing with their peers. [Your participation in this five-minute survey]([link removed]\[W4H6FHB_Conf\] "Survey link in text") will help inform 2023 educational and connection opportunities, including virtual community conferences, research webinars, and other relevant content.

[Take the survey »]([link removed]\[W4H6FHB_Conf\] "Survey link")

[A dark-skinned woman with a nebulizer in her mouth uses her laptop computer]([link removed]\[W4H6FHB_Conf\])



National Public Health Emergency Extended

In response to the ongoing COVID-19 pandemic, the national Public Health Emergency (PHE) will be extended through the end of the year. The PHE allows Medicaid enrollees to maintain coverage through the end of the PHE period without needing to renew their coverage. If you’re on Medicaid, ensure you’ve updated your address in the Medicaid system so you can receive information about when you’ll need to renew your coverage.

Contact Compass to learn more » ([link removed])




ROSE UP Live Celebration Now on YouTube

Last week, members of the cystic fibrosis community came together to celebrate our third annual ROSE UP, a virtual fundraising event created and led by adults with CF.
Watch the recording from this year’s event ([link removed])
to hear from ROSE UP committee members, participants, and CF Foundation leadership about how they marked this special celebration.

Watch the virtual celebration » ([link removed])


([link removed])


Watch our Grampions Celebration

In case you missed it,
% link:[link removed] name="Grampions recording link in text" content="the recording from our Grampions Celebration is now available on YouTube" %]. Watch now to hear stories from grandparents and grandpersons from across the country, a medical update from Bruce Marshall, MD, and to celebrate the CF community.

Watch the recording » ([link removed])




WE WILL NOT REST UNTIL WE FIND A CURE


DONATE ([link removed])


([link removed])
% link:[link removed] name="[link removed]" content="" %]
% link:[link removed] name="[link removed]" content="" %]
% link:[link removed] name="[link removed]" content="" %]


www.cff.org ([link removed])

4550 Montgomery Avenue, Suite 1100N | Bethesda, MD 20814 US

Got this as a forward? [Sign up]([link removed]) to receive our future emails.

[Opt out]([link removed]) of this mailing list |
Opt out ([link removed])
of all CFF emails

This email was sent to [email protected].
To continue receiving our emails, add us to your address book.