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X-WR-CALNAME:Cystic Fibrosis Family Connection
X-ORIGINAL-URL:https://cffamilyconnection.org
X-WR-CALDESC:Events for Cystic Fibrosis Family Connection
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DTSTART;TZID=America/New_York:20230412T190000
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DTSTAMP:20260430T124454
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UID:10211-1681326000-1681330500@cffamilyconnection.org
SUMMARY:Life Without Modulators Small Group Discussion
DESCRIPTION:An announcement from the Cystic Fibrosis Foundation: \nWhile many are celebrating the progression of CFTR modulators (Trikafta®\, Symdeko®\, Kalydeco® and Orkambi®)\, others are waiting for their “wonder drug.” To support the members of the CF community who are not benefiting from a modulator\, the CF Foundation is hosting a small group discussion to share experiences around Life Without Modulators. \nThis discussion is for adults with CF who are not eligible for or not benefiting from a CFTR modulator. \nDiscussions will be peer-led with one or two CF Foundation staff present during the conversations and can assist as needed. Please note this is not a support group facilitated by a mental health professional. \nThe Life Without Modulators discussion will take place for 75 minutes\, on Wednesday\, April 12 from 7-8:15 p.m. EST. \nClick Here to Register for Small Group Discussion \nBy registering\, you agree that you understand the CF Foundation will handle your information as described in its Privacy Policy. \nFor any questions\, please email Kelsey Logan (klogan@cff.org) or Gillian Mocek (gmocek@cff.org). \n 
URL:https://cffamilyconnection.org/event/life-without-modulators-small-group-discussion/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
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DTSTART;TZID=America/New_York:20230418T190000
DTEND;TZID=America/New_York:20230418T203000
DTSTAMP:20260430T124454
CREATED:20230323T022004Z
LAST-MODIFIED:20240520T031439Z
UID:10157-1681844400-1681849800@cffamilyconnection.org
SUMMARY:43rd Annual Kit Taylor Memorial Lecture
DESCRIPTION:An important local tradition continues with the 43rd Annual Kit Taylor Memorial Lecture. This year\, Dr. Virginia Stallings will present an “Update on Nutrition Care for Children and Adults with CF.” You can see the details in the flyer to the left. \nAs in recent years\, the lecture will be held in the Kaplan Room at Golisano Children’s Hospital with a Zoom broadcast for those who cannot – or choose not – to attend in person. Anyone attending in person is asked to wear a mask. Consistent with Cystic Fibrosis Foundation infection control protocols\, individuals with CF are encouraged to participate through the Zoom session. The link for the virtual session is:  \nParking passes for the Strong garage will be provided to all attendees.
URL:https://cffamilyconnection.org/event/43rd-annual-kit-taylor-memorial-lecture/
LOCATION:Golisano Children’s Hospital\, 601 Elmwood Avenue\, Rochester\, NY\, 14620\, United States
CATEGORIES:Information Event
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230426T180000
DTEND;TZID=America/New_York:20230426T220000
DTSTAMP:20260430T124454
CREATED:20230315T214029Z
LAST-MODIFIED:20230403T002900Z
UID:9786-1682532000-1682546400@cffamilyconnection.org
SUMMARY:ResearchCon 2023 - Day 1
DESCRIPTION:Check our Announcement for details. \nCheck the ResearchCon 2023 page for a full schedule of sessions for both days and a link to registration. \nVea la página de registro de ResearchCon 2023 en español. \n  \n 
URL:https://cffamilyconnection.org/event/researchcon-2023/
LOCATION:On-line Webinar
CATEGORIES:CF Foundation,Education
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230427T180000
DTEND;TZID=America/New_York:20230427T220000
DTSTAMP:20260430T124454
CREATED:20230403T003327Z
LAST-MODIFIED:20230403T003428Z
UID:10223-1682618400-1682632800@cffamilyconnection.org
SUMMARY:ResearchCon 2023 - Day 2
DESCRIPTION:Check our Announcement for details. \nCheck the ResearchCon 2023 page for a full schedule of sessions for both days and a link to registration. \nVea la página de registro de ResearchCon 2023 en español.
URL:https://cffamilyconnection.org/event/researchcon-2023-day-2/
LOCATION:NY
CATEGORIES:CF Foundation,Education
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