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X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
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DTSTART:20240101T000000
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DTSTART;VALUE=DATE:20250412
DTEND;VALUE=DATE:20250413
DTSTAMP:20260420T060229
CREATED:20250131T234124Z
LAST-MODIFIED:20250131T234124Z
UID:8784-1744416000-1744502399@www.cdlsusa.org
SUMMARY:Adolescent and Adult Multidisciplinary Clinic
DESCRIPTION:This Foundation-managed\, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore\, MD. Foundation Medical Director Antonie Kline\, M.D.\, Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC\, has led these clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. \nPresentations on the following topics from CdLS Clinical Advisory Board members: Behavioral Psychology\, Child Psychiatry\, Gastroenterology\, Genetics\, Gynecology\, Neurology\, Pediatric Ophthalmology\, Speech and Language\, Urology. Live Q&A with CdLS Clinical Advisory Board Members. \nFor more information on the clinic or to secure your spot\, contact Mindy Graham or call 860.676.8166.
URL:https://www.cdlsusa.org/event/adolescent-and-adult-multidisciplinary-clinic-3/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
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DTSTART;TZID=UTC:20250412T110000
DTEND;TZID=UTC:20250412T140000
DTSTAMP:20260420T060229
CREATED:20250108T205129Z
LAST-MODIFIED:20250313T163325Z
UID:8685-1744455600-1744466400@www.cdlsusa.org
SUMMARY:NORD (National Organization for Rare Disease ) Color Run for CdLS
DESCRIPTION:Join us for a new\, fun event to raise awareness and funds for our CdLS community.\nThe Eckerd College Science Outreach Club has recently established a Students for Rare chapter affiliated with the National Organization for Rare Disorders. Their mission is to raise awareness about rare diseases and advocate for equitable access to healthcare for individuals within the rare disease community. Through education\, outreach\, and advocacy\, the organization aims to amplify the voices of those affected by rare conditions and work toward a more inclusive and supportive healthcare system. \nMadi McCune\, a senior and member of the Science Outreach Club (SOC)\, chose the CdLS Foundation because Madi did a research project through Harvard Medical School this past summer at Massachusetts General Hospital’s Center for Genomic Medicine that focused on the pathophysiology of cohesinopathies\, CdLS being the most prominent. Learning about this disease encouraged her and her chapter to involve ourselves further by creating a fundraiser to support future research and the families impacted by this rare genetic disorder. \nSupport Madi and the Eckerd College Science Outreach Club Students and their NORD Chapter on Saturday\, April 12 at 11:00 a.m. at the Eckerd College Campus GO Pavilion for the NORD Color Run for CDLS. It will be a 1.5-mile walk/run. Have some fun and raise awareness and funds for this rare disorder. \nSee you there! \nThank you. Together\, we will continue to reach out\, provide help\, and give hope to the CdLS community. \nSaturday\, April 12\, 2025\n11:00 a.m.\nEckerd College Waterfront\n4200 54th Ave. S\nSt. Petersburg\, FL\n\nCan’t make the Color Run but still want to support it? Scan the QR Code.
URL:https://www.cdlsusa.org/event/nord-national-organization-for-rare-disease-color-run-for-cdls/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/01/colorrunpng.png
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BEGIN:VEVENT
DTSTART;TZID=UTC:20250423T200000
DTEND;TZID=UTC:20250423T210000
DTSTAMP:20260420T060229
CREATED:20250131T202455Z
LAST-MODIFIED:20250131T202455Z
UID:8777-1745438400-1745442000@www.cdlsusa.org
SUMMARY:Hear from the Siblings: Sharing Their Journey with Medical Complexity
DESCRIPTION:Join a panel of siblings to gain insights into the fears and worries that siblings carry\, the things that helped them (and those that didn’t)\, and how loving a brother or sister with medical complexity shapes them. \nThis session will be moderated by Dr. Wendy Plante\, who for over twenty years has worked with siblings of children with illness and disability and their families and has been involved with research and training to address siblings’ needs. \nThis event will take place on Wednesday\, April 23rd at 8:00 pm ET (7:00 pm CT\, 6:00 pm MT\, 5:00 pm PT). \nRegister here
URL:https://www.cdlsusa.org/event/hear-from-the-siblings-sharing-their-journey-with-medical-complexity/
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