CdLS Foundation
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10 events found.

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  • February 2025
  • Thu 27
    February 27 @ 8:00 pm - 9:00 pm

    Being My Child’s Protector, Advocate, and Decision-Maker in the NICU Webinar

    Anticipating the birth of a child can be one of the happiest times for parents. But when babies have life-threatening medical issues and begin their lives in the NICU, everything […]

  • March 2025
  • Sat 1
    March 1 - March 31

    Stop and Shop Community Bag Program

    For the entire month of March, when you purchase a $2.50 reusable Community Bag at the Stop & Shop located at 498 Bushy Hill Road, Simsbury, CT, $1 is donated […]

  • Mon 10
    March 10 @ 8:00 pm - 9:00 pm

    Supporting Your Family’s Wishes: The Value of Advance Directives and Preparing for Complex Medical Decisions Webinar

    Please join us to explore how completing healthcare advance directives for/with your child can support your family’s goals and wishes. We will discuss the importance of discussing and documenting healthcare […]

  • Wed 12
    March 12

    Multi-Specialty Clinic for children with CdLS at Shriners Children’s Salk Lake City

    Multi-Specialty Clinic for children with CdLS will be held on March 12, 2025, at Shriners Children's Salt Lake City. The CdLS Foundation and Shriners Children's Salt Lake City have a […]

  • April 2025
  • Sat 12
    April 12

    Adolescent and Adult Multidisciplinary Clinic

    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 […]

  • Sat 12
    April 12 @ 11:00 am - 2:00 pm

    NORD (National Organization for Rare Disease ) Color Run for CdLS

    Join us for a new, fun event to raise awareness and funds for our CdLS community. The Eckerd College Science Outreach Club has recently established a Students for Rare chapter affiliated with […]

  • Wed 23
    April 23 @ 8:00 pm - 9:00 pm

    Hear from the Siblings: Sharing Their Journey with Medical Complexity

    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 […]

  • May 2025
  • Sat 10
    May 10 - September 30

    Champions for CdLS Golf Tournament

    Exciting news! The New England Golf Classic is going virtual!! Join us for an interactive, new way to continue raising awareness and funds and keeping the tradition going. You can play […]

  • Sat 10
    May 10

    In Full Bloom for Zuri

    Chicago, IL

      Meet Zuri, Our Joyful Bloom! Zuri is a bright light in our lives, full of strength, love, and a spirit that keeps blooming no matter the season. She lives […]

  • Sat 10
    May 10

    International CdLS Awareness Day

    International CdLS Awareness Day is observed each year to increase understanding and bring attention to Cornelia de Lange Syndrome (CdLS), an often misdiagnosed and little-known genetic condition. This special day […]

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CdLS Foundation

30 Tower Lane, Suite 400. Avon, Connecticut 06001 USA

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