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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:20230212
DTEND;VALUE=DATE:20230213
DTSTAMP:20260502T092916
CREATED:20221017T185734Z
LAST-MODIFIED:20221017T185734Z
UID:6676-1676160000-1676246399@www.cdlsusa.org
SUMMARY:A Day of Remembrance
DESCRIPTION:Losing a loved one with CdLS at any age can be life-altering. Parents\, siblings\, relatives\, and friends feel a tremendous loss and often have difficulty understanding why. It is so important that we as a community surround them with support and unconditional love. Although they have lost their child\, grandchild\, or sibling – they still belong and will forever be part of our journey. \nOn February 12\, we will be celebrating CdLS Remembrance Day. We ask that our fellow CdLS community members partake in this special day with us to show solidarity with families who no longer have loved ones with them. \nPlease take a moment to remember everyone with CdLS who has died over the years. \nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/a-day-of-remembrance-2/
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BEGIN:VEVENT
DTSTART;TZID=UTC:20230223T130000
DTEND;TZID=UTC:20230223T140000
DTSTAMP:20260502T092916
CREATED:20230223T000019Z
LAST-MODIFIED:20230223T000019Z
UID:6990-1677157200-1677160800@www.cdlsusa.org
SUMMARY:Parent University: Special Needs Trust: The Who's\, The What's\, and The Why's Webinar
DESCRIPTION:Join our guest speakers who will share with us the critical information you need to know about special needs trusts. Who should you consider as trustees\, what are the important questions you should be asking\, and why should you even consider setting up a trust for your family member. What kind of trust is right for your situation? How do you pick the right attorney? \nRegister Here
URL:https://www.cdlsusa.org/event/parent-university-special-needs-trust-the-whos-the-whats-and-the-whys-webinar/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2020/12/logo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20230228
DTEND;VALUE=DATE:20230301
DTSTAMP:20260502T092916
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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END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20230228T130000
DTEND;TZID=UTC:20230228T140000
DTSTAMP:20260502T092916
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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