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PRODID:-//CdLS Foundation - ECPv6.15.18//NONSGML v1.0//EN
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X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
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DTSTART:20220101T000000
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260502T102617
CREATED:20221017T185607Z
LAST-MODIFIED:20221017T185607Z
UID:6674-1677542400-1677628799@www.cdlsusa.org
SUMMARY:Rare Disease Day
DESCRIPTION:Rare Disease Day® takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. \nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/rare-disease-day-3/
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DTSTART;TZID=UTC:20230228T130000
DTEND;TZID=UTC:20230228T140000
DTSTAMP:20260502T102617
CREATED:20230209T194219Z
LAST-MODIFIED:20230209T194219Z
UID:6949-1677589200-1677592800@www.cdlsusa.org
SUMMARY:Rare Disease Day: Learn about the CdLS Health Care Notebook Webinar
DESCRIPTION:There are often challenges when you have a family member with a rare diagnosis like CdLS. All the puzzle pieces that make up your loved one’s care can seem so disjointed. Information can be hard to get\, hard to understand\, and even harder to keep organized and easy to find just when you need it most. It can feel like you are constantly recreating the wheel whenever your family member has a new provider. So you are comfortable that they understand the most important things about your family member.\n\nThe CdLS Health Care Notebook provides an easy way to keep track of and share important information with your care team.\n\nThis webinar is part of two-part series. In this webinar\, you will learn how to use the CdLS Health Care Notebook as an essential tool in coordinating and managing the needs of your family member with CdLS.\n\nThe second webinar will provide information on Navigating the Health Care System and how to become a stronger advocate with providers and your Health Plan. We hope you will join us for these webinars.\n\nRegister now
URL:https://www.cdlsusa.org/event/rare-disease-day-learn-about-the-cdls-health-care-notebook-webinar/
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