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DTSTART;TZID=America/Detroit:20260507T190000
DTEND;TZID=America/Detroit:20260507T201500
DTSTAMP:20260613T114029
CREATED:20260116T174044Z
LAST-MODIFIED:20260116T174044Z
UID:9925-1778180400-1778184900@www.cdlsusa.org
SUMMARY:CdLS Foundation May Virtual Support Group for Parents
DESCRIPTION:The next CdLS Foundation Parent Support Group is scheduled for May 7\, and we’d love to welcome you. \n📅 May 7\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Future Planning \nThis confidential\, parent-only space offers time to:\n-Share what’s on your heart — or just listen\n-Learn from other parents who truly understand\n-Feel seen\, supported\, and less alone \nEven if you’re not sure you’ll feel like talking\, you are welcome just as you are. We would be honored to have you with us. \nIf you have any questions\, please don’t hesitate to contact Family Service at familyservicesteam@CdLSusa.org or call the Foundation at 888.753.2357. \nRegister here.
URL:https://www.cdlsusa.org/event/cdls-foundation-may-virtual-support-group-for-parents/
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260509
DTEND;VALUE=DATE:20260510
DTSTAMP:20260613T114029
CREATED:20260112T160434Z
LAST-MODIFIED:20260112T160434Z
UID:9896-1778284800-1778371199@www.cdlsusa.org
SUMMARY:2026 International CdLS Awareness Day
DESCRIPTION:International CdLS Awareness Day is an opportunity for our community and the world to come together to raise awareness about CdLS\, a rare and often misunderstood genetic spectrum disorder. This meaningful day is about more than awareness; it’s about connection\, education\, and hope. \nFamilies\, advocates\, healthcare professionals\, and supporters unite to share stories\, spread knowledge\, and amplify the voices of individuals living with CdLS. From going live on social media and sharing educational flyers to presenting at schools\, civic groups\, and medical offices\, every action helps build understanding and awareness. Many community members also reach out to local media\, host gatherings\, launch social media campaigns\, and organize fundraisers to support research and family services. \nTogether\, we can help promote earlier diagnosis\, better resources\, and a more compassionate world for individuals with CdLS and their families. Every share\, every conversation\, and every act of advocacy makes a difference. \nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/2026-international-cdls-awareness-day/
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BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260509T110000
DTEND;TZID=America/Detroit:20260509T150000
DTSTAMP:20260613T114029
CREATED:20260211T202247Z
LAST-MODIFIED:20260317T173730Z
UID:10006-1778324400-1778338800@www.cdlsusa.org
SUMMARY:Midwest Family Gathering- Missouri
DESCRIPTION:Join families from Missouri and surrounding states for a CdLS Foundation-sponsored Family Gathering. \nGraciously hosted by the Sprehe Family\, parents of Izaak. \nSaturday\, May 9\, 2026\n11 a.m. – 3 p.m. CT \nMillennium Park\n2 Barnes W Drive\nCreve Coeur\, MO 63141\nCelebrate International CdLS Awareness Day with us! Bring the whole family and join us! You’ll have the chance to meet families in the area who share similar challenges and triumphs as parents of children with Cornelia de Lange Syndrome (CdLS).\n\n  \nSPECIAL GUESTS: CdLS Foundation staff will be in attendance \nLUNCH WILL BE PROVIDED. Pizza will be provided\, and families are asked to bring a side dish\, snack\, beverage\, or dessert to share. \n\n\nRegister Here.
URL:https://www.cdlsusa.org/event/midwest-family-gathering-missouri/
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DTSTART;TZID=America/New_York:20260514T130000
DTEND;TZID=America/New_York:20260514T140000
DTSTAMP:20260613T114029
CREATED:20260424T171409Z
LAST-MODIFIED:20260424T171409Z
UID:10158-1778763600-1778767200@www.cdlsusa.org
SUMMARY:2026 Parent University Class 5 - Vacations and Respite Ideas for the Whole Family
DESCRIPTION:May Parent University™ Class\nPresented by Protected Tomorrows \nClass Five\nVacations and Respite Ideas for the Whole Family\nMay 14\, 2026\n12:00 – 1:00 p.m. CST \nIn this exciting session about respite\, Protected Tomorrows will cover:\n• Have you ever thought t is just not possible to have a vacation?\n• Or maybe just some respite? How does that fit into your life?\n• Where can you find resources that match the needs of your family? \nAll classes begin at 12:00 p.m. CST\nPlease note that classes are recorded for future viewing \nRegister Here: https://us02web.zoom.us/webinar/register/WN_JDssRPESRa2dYntVnrYC6g#/registration
URL:https://www.cdlsusa.org/event/2026-parent-university-class-5-vacations-and-respite-ideas-for-the-whole-family/
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BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260521T120000
DTEND;TZID=America/Detroit:20260521T130000
DTSTAMP:20260613T114029
CREATED:20260415T130458Z
LAST-MODIFIED:20260415T130458Z
UID:10136-1779364800-1779368400@www.cdlsusa.org
SUMMARY:In the Room: Using Social Media: Pros and Perils of Virtual Engagement Webinar
DESCRIPTION:Hosted by Courageous Parent Network \nSocial media has transformed how families navigate complex medical journeys\, creating unprecedented opportunities for connection\, information sharing\, and support. For parents of children with medical complexity and rare conditions\, online platforms can offer vital lifelines to communities who understand their unique challenges. Yet these same spaces also present risks that deserve careful consideration. This webinar\, featuring Dr. Karen Low and a panel of parents\, explores the multifaceted relationship between social media and families managing complex pediatric health conditions. \nThis event will take place on Thursday\, May 21st at 12:00 pm ET (11:00 am CT\, 10:00 am MT\, 9:00 am PT). \nLearning objectives: \n\nDescribe how parents of children with medical complexity and rare conditions engage with social media.\nIdentify potential risks of sharing information on social media.\nName potential benefits of seeking support through social media.\n\nPlease see below for continuing medical education (CME/CEU) credit information. \nAccreditation \nIn support of improving patient care\, Stanford Medicine is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME)\, the Accreditation Council for Pharmacy Education (ACPE)\, and the American Nurses Credentialing Center (ANCC)\, to provide continuing education for the healthcare team. \nCredit Designation \nAmerican Medical Association (AMA) \nStanford Medicine designates this Live Activity for a maximum of 1.00 AMA PRA Category 1 CreditsTM.  Physicians should claim only the credit commensurate with the extent of their participation in the activity. \nAmerican Nurses Credentialing Center (ANCC) \nStanford Medicine designates this live activity for a maximum of 1.00 ANCC contact hours. \nAccreditation Council of Pharmacy Education (ACPE) \nStanford Medicine designates this knowledge-based activity for a maximum of 1.00 hours. Credit will be provided to NABP CPE Monitor within 60 days after the activity completion. Pharmacist UAN: JA0000751-0000-26-007-L99-P \nASWB Approved Continuing Education Credit (ACE) – Social Work Credit \nAs a Jointly Accredited Organization\, Stanford Medicine is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations\, not individual courses\, are approved under this program. Regulatory boards are the final authority on courses accepted for continuing education credit. Social workers completing this activity receive 1.00 general continuing education credits. \nAmerican Psychological Association (APA) \nContinuing Education (CE) credits for psychologists are provided through the co-sponsorship of the American Psychological Association (APA) Office of Continuing Education in Psychology (CEP). The APA CEP Office maintains responsibility for the content of the programs. \nCommission on Dietetic Registration (CDR) \nCompletion of this RD/DTR profession-specific or IPCE activity awards CPEUs (One IPCE credit = One CPEU). \nIf the activity is dietetics-related but not targeted to RDs or DTRs\, CPEUs may be claimed which are commensurate with participation in contact hours (One 60 minute hour = 1CPEU) \nRD’s and DTRs are to select activity type 102 in their Activity Log. Sphere and Competency selection is at the learner’s discretion. \nPhysical Therapy\, Occupational Therapy (PT\, OT) \nStanford Health Care Department of Rehabilitation is an approved provider for physical therapy and occupational therapy for courses that meet the requirements set forth by the respective California Boards. This course is approved for 1.00 hour CEU for PT and OT. \nView full CME information and disclosure summary at https://stanford.cloud-cme.com/CPNMay2026 \nRegister Here
URL:https://www.cdlsusa.org/event/in-the-room-using-social-media-pros-and-perils-of-virtual-engagement-webinar/
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20260530
DTEND;VALUE=DATE:20260531
DTSTAMP:20260613T114029
CREATED:20260211T202507Z
LAST-MODIFIED:20260323T202613Z
UID:10007-1780099200-1780185599@www.cdlsusa.org
SUMMARY:Southwest Family Gathering- Texas
DESCRIPTION:Join families from Texas for a CdLS Foundation-sponsored Family Gathering. \nGraciously hosted by the Hendricks and Woods/Jacob families. \nSaturday\, May 30\, 2026\n10:30 a.m. – 1:30 p.m. C.T. \nVictory Forest Community Center\n3427 Hemphill Street\nFort Worth\, TX 76110 \nFamily Gatherings are planned with your whole family in mind. \nCdLS Foundation staff and Clinical Advisory Board members will be in attendance. \nLUNCH WILL BE PROVIDED. Families are asked to bring a side dish\, snack\, dessert\, or beverage to share. \nRoom Block Information:\nThe Omni Fort Worth\n1300 Houston Street\nFort Worth\, TX 76102 \nBook Your Hotel Room Here.\nRoom Block Closes: Friday\, May 8\, 2026. \nRegister Here.
URL:https://www.cdlsusa.org/event/southwest-family-gathering-texas/
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