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DTSTART;TZID=UTC:20251119T140000
DTEND;TZID=UTC:20251119T150000
DTSTAMP:20260403T183844
CREATED:20251113T231042Z
LAST-MODIFIED:20251113T231042Z
UID:9708-1763560800-1763564400@www.cdlsusa.org
SUMMARY:Stay Covered: Open Enrollment Essentials for Rare Disease Families
DESCRIPTION:Health Insurance is changing …are you ready? Join NORD on November 19 at 2:00PM EST for a webinar to help members of the rare disease community understand what to look for during open enrollment. We will provide tips for choosing the right health plan so you can keep getting the care and medicines you need. \nRegister here
URL:https://www.cdlsusa.org/event/stay-covered-open-enrollment-essentials-for-rare-disease-families/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/11/NORD-webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251202
DTEND;VALUE=DATE:20251203
DTSTAMP:20260403T183844
CREATED:20250604T183411Z
LAST-MODIFIED:20250604T183411Z
UID:9347-1764633600-1764719999@www.cdlsusa.org
SUMMARY:Giving Tuesday
DESCRIPTION:Use GivingTuesday to Support the CdLS Foundation!\nMark your calendars for December 2. It is the annual celebration of GivingTuesday\, a global movement that inspires people to give\, collaborate\, and make a difference. This special day is all about turning generosity into action\, and it’s the perfect opportunity to support the CdLS Foundation. \nWhether you choose to donate\, share our mission on social media\, host a fundraiser\, or simply spread kindness\, every act of generosity counts. Your support helps raise awareness and provide critical resources for individuals with CdLS and their families and professionals caring for them. \nTogether\, we can transform compassion into real change. Join the CdLS Foundation this GivingTuesday and help us continue our mission of support\, education\, and hope. \nEveryone has something to give; what will you give on December 2?
URL:https://www.cdlsusa.org/event/giving-tuesday-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2023/02/GT-LOGO.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251204T190000
DTEND;TZID=UTC:20251204T200000
DTSTAMP:20260403T183844
CREATED:20250604T182809Z
LAST-MODIFIED:20250820T205135Z
UID:9342-1764874800-1764878400@www.cdlsusa.org
SUMMARY:Virtual Support Groups for Parents
DESCRIPTION:The CdLS Foundation is pleased to offer Virtual Support Groups for Parents\, providing a consistent opportunity to connect\, share\, and support one another.\n🗓 Thursday\, December 4\, 2025\n🕖 7:00 – 8:15 p.m. ET\nWe believe no parent should walk this path alone at the CdLS Foundation. As caregivers\, you are the backbone of our community\, and we see you. We understand the emotional and physical challenges that come with your role. \nThese virtual gatherings are here to help you: \n\nConnect with others who understand your journey\nShare and receive meaningful advice\nFeel heard\, supported\, and uplifted\n\nWhether you’re new to the CdLS community or have been walking this road for years\, we invite you to join us for an hour of connection\, understanding\, and encouragement. You belong here. \nSessions will be held on the first Thursday of every month and will be dedicated to connection and support. \nTo learn more\, contact the Family Service Team at familyservicesteam@CdLSusa.org.
URL:https://www.cdlsusa.org/event/virtual-support-groups-for-parents-6/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/05/Virtual-Support-Groups-.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20251211T120000
DTEND;TZID=UTC:20251211T130000
DTSTAMP:20260403T183844
CREATED:20250618T222139Z
LAST-MODIFIED:20250618T222139Z
UID:9419-1765454400-1765458000@www.cdlsusa.org
SUMMARY:Parent University: Checkpoints to Peace of Mind- The Review of Our Journey and Next Steps to Getting There
DESCRIPTION:How did we do? We will review the different peace of mind points\, evaluate our successes and failures and set some goals for next year. HOPE is important on the journey to PEACE OF MIND! Let’s recognize our successes and pat ourselves on the back for them. Let’s identify our areas to concentrate on so that we have goals for the next year. \nRegister here
URL:https://www.cdlsusa.org/event/parent-university-checkpoints-to-peace-of-mind-the-review-of-our-journey-and-next-steps-to-getting-there/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2020/04/Parent-University.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260108T190000
DTEND;TZID=America/Detroit:20260108T201500
DTSTAMP:20260403T183844
CREATED:20251229T204824Z
LAST-MODIFIED:20251229T204824Z
UID:9833-1767898800-1767903300@www.cdlsusa.org
SUMMARY:CdLS Foundation January Virtual Support Group for Parents
DESCRIPTION:We know how much you carry every day — appointments\, school meetings\, medications\, behaviors\, and the emotional weight of loving someone with CdLS. It’s a lot\, and you don’t have to carry it alone 💙 \nEach month\, the CdLS Foundation hosts virtual support groups for parents of children and adults with CdLS. Our next CdLS Parent Support Group is coming up on January 8\, and we’d love to welcome you. \n📅 January 8\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Goal Setting \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. \nRegister here.
URL:https://www.cdlsusa.org/event/cdls-foundation-january-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/12/Jan.-Support-Group-Social-and-Web-Graphic.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260121T200000
DTEND;TZID=America/Detroit:20260121T210000
DTSTAMP:20260403T183844
CREATED:20260108T203816Z
LAST-MODIFIED:20260108T203816Z
UID:9879-1769025600-1769029200@www.cdlsusa.org
SUMMARY:In the Room: Navigating the Space Between Adjustment and Acceptance in the Context of a Genetic Diagnosis
DESCRIPTION:Hosted by Courageous Parent Network (CPN) \nReceiving a genetic diagnosis (or lacking a diagnosis) for a child can be a profoundly life-altering experience for families. In this session\, Mary-Frances will draw on her extensive experience working with parents and caregivers to explore the complex emotional responses that emerge as families learn to live with a diagnosis or uncertainty and build their “new normal.” Do families truly accept the diagnosis\, or do they adjust without full acceptance? Can both coexist? Join Mary-Frances and a panel of parents as they delve into the realities of accepting versus adjusting while navigating the challenges of their child’s medical complexity. \nThis event will take place on Wednesday\, January 21st at 8:00 pm ET (7:00 pm CT\, 6:00 pm MT\, 5:00 pm PT). \nLearning objectives are: \nDifferentiate between emotional adjustment and acceptance in the context of a child’s genetic diagnosis.\nDiscuss the varied emotional responses and coping strategies parents may experience over time.\nDescribe how a genetic diagnosis can be understood as one aspect of a child’s identity\, rather than a defining characteristic.\nIdentify at least two ways that clinicians can support families in light of a genetic diagnosis. \nRegister here
URL:https://www.cdlsusa.org/event/in-the-room-navigating-the-space-between-adjustment-and-acceptance-in-the-context-of-a-genetic-diagnosis/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/January-ITR-Website-1-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260205T190000
DTEND;TZID=America/Detroit:20260205T201500
DTSTAMP:20260403T183844
CREATED:20260114T151438Z
LAST-MODIFIED:20260114T151438Z
UID:9912-1770318000-1770322500@www.cdlsusa.org
SUMMARY:CdLS Foundation February Virtual Support Group for Parents
DESCRIPTION:The next CdLS Foundation Parent Support Group is scheduled for February 5\, and we’d love to welcome you. \n📅 February 5\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Caregiver Burnout \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. \n 
URL:https://www.cdlsusa.org/event/cdls-foundation-february-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/Feb.-Support-Group-Caregiver-Burnout.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260210T200000
DTEND;TZID=America/Detroit:20260210T210000
DTSTAMP:20260403T183844
CREATED:20260108T204631Z
LAST-MODIFIED:20260112T140947Z
UID:9882-1770753600-1770757200@www.cdlsusa.org
SUMMARY:In the Room: Unlocking Answers: What Every Parent Should Know About Genetic Testing
DESCRIPTION:Hosted by Courageous Parent Network (CPN) \nGenetic testing can play a powerful role in helping families find answers about their child’s health. In this session\, we’ll walk you through the different types of genetic tests\, what they can (and can’t) tell you\, and how they’re used to diagnose a wide range of conditions. We’ll also talk about how re-checking genetic data over time can lead to new insights and better outcomes. Finally\, we’ll explore how ongoing efforts are making genetic testing more available and more useful for families from all backgrounds. \nThis event will take place on Tuesday\, February 10th 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/mondaywork-management-7-88-fscognamiglio-home-my-work-ai-notetaker-235-digital-board-communication-creative-requests-private-board-to-do-list-board-website-audit-form-recently-viewed-website-audit-p/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/February-ITR-Website-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260212
DTEND;VALUE=DATE:20260213
DTSTAMP:20260403T183844
CREATED:20260108T205843Z
LAST-MODIFIED:20260113T171803Z
UID:9884-1770854400-1770940799@www.cdlsusa.org
SUMMARY:International CdLS Remembrance Day
DESCRIPTION:Losing a loved one with CdLS at any age is life-altering. Parents\, siblings\, grandparents\, relatives\, and friends experience profound grief\, often accompanied by questions that have no easy answers. During these moments\, the support of a compassionate community can make all the difference. Though their child\, sibling\, or loved one may no longer be physically with them\, these families remain an irreplaceable part of our CdLS family and our shared journey.\n\n\nOn February 12\, we will honor CdLS Remembrance Day\, a time to come together in reflection\, love\, and solidarity. We are hosting a virtual memorial event at 11:00 a.m. EST\, and we invite community members from around the world to join us as we remember\, honor\, and hold space for those we have lost.\n\n\nThe event will open with remarks from Dave Axtell\, Chairman of the CdLS World Groups and proud dad to Jade\, followed by a keynote presentation from Heather Stang\, MA\, C-IAYT\, an internationally recognized grief educator\, author\, and mindfulness practitioner.\n\n\nHeather Stang\, MA\, C-IAYT\, is an internationally recognized grief educator\, author\, and mindfulness practitioner. She is the author of Navigating Loss\, Living With Grief\, and From Grief to Peace\, and the creator of the Mindfulness and Grief System featured in The Handbook of Grief Therapies (2023). Heather hosts the Mindfulness & Grief Podcast and is the 2025 recipient of the Association for Death Education and Counseling Clinical Practice Award.\n\n Register here\n \nDownload and add the Facebook profile picture for International CdLS Remembrance Day.\n \nFor more information\, contact Gabrielle Nadeau.
URL:https://www.cdlsusa.org/event/international-cdls-remembrance-day-2/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/International-CdLS-Remembrance-Day-2026.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260212T120000
DTEND;TZID=America/Detroit:20260212T130000
DTSTAMP:20260403T183844
CREATED:20260122T204319Z
LAST-MODIFIED:20260122T204319Z
UID:9953-1770897600-1770901200@www.cdlsusa.org
SUMMARY:2026 International CdLS Remembrance Day: Continuing Your Child’s Legacy
DESCRIPTION:International and United States Gathering (English Speaking) – Continuing Your Child’s Legacy \nAfter the main Remembrance Day event\, international and United States families are warmly invited to stay with us for a special English-language gathering focused on connection\, reflection\, and emotional support at 12:00 p.m. (Eastern Time\, U.S.). \nRegister Here for the 12 p.m. event. \nThis space will be led by: Amy Graver\, Bereaved Champion at Courageous Parents Network. \nAmy Graver currently works in the corporate world and is a writer\, a wife\, and a mom of four. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey that cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and a new perspective on life. She is dedicated to making the cancer experience better for future families. Amy is an enthusiast of US presidential history; she aspires to be a professional seashell collector and is absurdly competitive about things that don’t matter. \nWe hope you will join us as we honor our loved ones\, support one another\, and remember—together. \nQuestions? Email Family Service at familyservicesteam@CdLSusa.org.
URL:https://www.cdlsusa.org/event/2026-international-cdls-remembrance-day-continuing-your-childs-legacy/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/CPN-Event-1100-am-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260212T120000
DTEND;TZID=America/Detroit:20260212T130000
DTSTAMP:20260403T183844
CREATED:20260122T204808Z
LAST-MODIFIED:20260122T204808Z
UID:9955-1770897600-1770901200@www.cdlsusa.org
SUMMARY:Día Internacional de Conmemoración del Síndrome de Cornelia de Lange
DESCRIPTION:El 12 de febrero de 2026\, nuestra comunidad CdLS de todo el mundo se reunirá para un\nencuentro muy especial: el Día Internacional de Recuerdo CdLS.\nEste será un espacio creado con amor para honrar a nuestros hijos y seres queridos\, recordar sus vidas y acompañarnos unos a otros con compasión y cariño. \nRecordar no es solo pensar en lo que hemos perdido\, sino también reconocer el amor que\npermanece y el significado que seguimos construyendo juntos. Encuentro posterior en español – Acompañamiento y reflexión para familias. Después del evento principal\, las familias están invitadas a quedarse con nosotros para un encuentro especial en español\, enfocado en el acompañamiento\, la reflexión y la conexión\, a las 12:00 p.m. (Hora del Este\, EE. UU.). \nhttps://bit.ly/4b57pcB \nEste espacio contará con la participación de:\nCarolina Cárdenas Vargas\, MS \nCarolina Cárdenas Vargas es psicóloga\, especialista en neuropsicología y profesional en enfermedades raras\, con más de 15 años de experiencia acompañando a personas y familias. Cuenta con una Maestría en Enfermedades Raras por la Universidad de Valencia y es profesora de posgrado en neuropsicología y neurorrehabilitación.\nHa sido reconocida por la Federación Colombiana de Enfermedades Raras por su liderazgo y compromiso con la atención y el acompañamiento de familias. A través de su trabajo con la Fundación Cornelia de Lange\, ha desarrollado iniciativas de apoyo y ha ofrecido conferencias para familias que atraviesan procesos de duelo\, memoria y sanación.\nAgradecemos especialmente que hayan sido las propias comunidades de habla hispana quienes solicitaron la participación de Carolina — reflejo de la confianza y la conexión compasiva que ha construido con las familias.
URL:https://www.cdlsusa.org/event/dia-internacional-de-conmemoracion-del-sindrome-de-cornelia-de-lange/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/Remembrance-Day-SPA.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260212T180000
DTEND;TZID=America/Detroit:20260212T190000
DTSTAMP:20260403T183844
CREATED:20260122T213619Z
LAST-MODIFIED:20260122T213619Z
UID:9957-1770919200-1770922800@www.cdlsusa.org
SUMMARY:Continuing the Legacy of Your Loved One
DESCRIPTION:United States families are warmly invited to join us for an English-language gathering focused on connection\, reflection\, and emotional support at 6:00 p.m. (Eastern Time\, U.S.). \nRegister here for the 6 p.m. event \nThis space will be led by: Amy Graver\, Bereaved Champion at Courageous Parents Network.\nAmy Graver currently works in the corporate world and is a writer\, a wife\, and a mom of four. Her daughter Lauren was diagnosed with rhabdomyosarcoma at age 7. Amy’s writing chronicles the journey that cancer has taken her family. Lauren’s cancer diagnosis imposed a new reality and a new perspective on life. She is dedicated to making the cancer experience better for future families. Amy is an enthusiast of US presidential history; she aspires to be a professional seashell collector and is absurdly competitive about things that don’t matter. \nWe hope you will join us as we honor our loved ones\, support one another\, and remember—together. \nQuestions? Email Family Service at familyservicesteam@CdLSusa.org.
URL:https://www.cdlsusa.org/event/continuing-the-legacy-of-your-loved-one/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/CPN-Event-600-pm.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260226T193000
DTEND;TZID=America/Detroit:20260226T203000
DTSTAMP:20260403T183844
CREATED:20260116T172812Z
LAST-MODIFIED:20260116T172812Z
UID:9919-1772134200-1772137800@www.cdlsusa.org
SUMMARY:Ask the Special Education Boss®: Live IEP Q&A with Karen Mayer Cunningham Webinar
DESCRIPTION:Hosted by Parenting Special Needs Magazine \nAsk the Special Education Boss®: Live IEP Q&A\nwith Karen Mayer Cunningham \nLIVE ONLINE EVENT \nJoin Parenting Special Needs Magazine for a free live Q&A webinar with nationally recognized special education advocate Karen Mayer Cunningham\, known as The Special Education Boss®. \nThis interactive session is designed to help parents\, caregivers\, and professionals get clear\, practical answers to real questions about: \n• IEPs\n• 504 plans\n• Evaluations\n• Navigating the special education process \nYou’ll leave with straightforward guidance and actionable next steps you can use right away. \nWHAT YOU’LL LEARN \nDo you have questions about your child’s IEP\, evaluations\, or educational rights? This live session focuses on real-world advocacy\, not theory. \nYou’ll learn how to: \n• Navigate common IEP challenges and roadblocks\n• Understand your child’s rights (FAPE\, LRE\, evaluations)\n• Respond when the school pushes back\n• Advocate effectively using proven strategies \n✔️ Bring your questions\n✔️ Get expert guidance — live\n✔️ Leave feeling more confident and prepared \nABOUT KAREN MAYER CUNNINGHAM\nKaren Mayer Cunningham—known nationally as The Special Education Boss—is a highly respected advocate\, speaker\, and trainer who has helped tens of thousands of families navigate the special education system with confidence. Her no-nonsense\, empowering approach gives parents and educators the tools they need to secure the services every child deserves. \nWANT TO GET THE MOST OUT OF THIS EVENT?\nPre-order Karen’s new book The Epic IEP™\, a powerful playbook for parents and educators navigating special education. Available at Barnes & Noble and Amazon. \nREGISTER NOW TO SAVE YOUR SEAT
URL:https://www.cdlsusa.org/event/ask-the-special-education-boss-live-iep-qa-with-karen-mayer-cunningham-webinar/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/Ask-the-Special-Education-Boss-Webinar.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260228
DTEND;VALUE=DATE:20260301
DTSTAMP:20260403T183844
CREATED:20260108T215652Z
LAST-MODIFIED:20260108T215652Z
UID:9886-1772236800-1772323199@www.cdlsusa.org
SUMMARY:Rare Disease Day
DESCRIPTION:RARE Is Not Rare \nOne out of every 10 Americans is living with a rare disease. Worldwide\, there are more than 300 million people with rare diseases. Too often\, these individuals and families are left isolated and without answers to their medical questions. It doesn’t have to be that way. \nRare Disease Day is a global initiative to raise awareness and generate support for individuals on a rare medical journey. It takes place on the last day of February\, which this year is February 28. \nThe National Organization for Rare Disorders (NORD) is the trusted voice of the more than 30 million Americans living with a rare disease. We are proud to be the official U.S. partner for Rare Disease Day. We invite you to read on to learn how to #ShowYourStripes in support of those with a rare disease. \nLearn more and visit: https://rarediseases.org/rare-disease-day/
URL:https://www.cdlsusa.org/event/rare-disease-day-4/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/RDD-2026.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260305T190000
DTEND;TZID=America/Detroit:20260305T201500
DTSTAMP:20260403T183844
CREATED:20260116T173424Z
LAST-MODIFIED:20260210T184723Z
UID:9921-1772737200-1772741700@www.cdlsusa.org
SUMMARY:CdLS Foundation March Virtual Support Group for Parents
DESCRIPTION:The next CdLS Foundation Parent Support Group is scheduled for March 5\, and we’d love to welcome you.\n📅March 5\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Community Integration \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-march-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/Mar.-Support-Group-Community-Integration.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260305T200000
DTEND;TZID=America/Detroit:20260305T200000
DTSTAMP:20260403T183844
CREATED:20260112T155712Z
LAST-MODIFIED:20260112T155934Z
UID:9891-1772740800-1772740800@www.cdlsusa.org
SUMMARY:In The Room: Addressing Feelings of Guilt and Regret: Strategies to Employ as a Caregiver
DESCRIPTION:Hosted by Courageous Parent Network (CPN) \nFeelings of guilt and regret\, including the anticipation of those emotions\, are natural for all parents. However\, they are particularly prevalent for those caring for children living with medical complexity. The stakes are high. Parents feel pressure to get it right – from making potentially life-saving medical decisions to ensuring that their child’s quality of life is as good as it can be to juggling the needs of the entire family. In this webinar\, Dr. Chrissy Salley\, a pediatric psychologist\, will describe common sources of guilt and regret. Borrowing from Cognitive Behavioral Therapy and the science of caregiving\, she will teach attendees strategies they can employ to manage feelings of guilt and regret throughout the caregiving journey. \nThis event will take place on Thursday\, March 5th 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/in-the-room-addressing-feelings-of-guilt-and-regret-strategies-to-employ-as-a-caregiver/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/March-ITR-Website-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260311
DTEND;VALUE=DATE:20260312
DTSTAMP:20260403T183844
CREATED:20251229T204211Z
LAST-MODIFIED:20251229T204211Z
UID:9828-1773187200-1773273599@www.cdlsusa.org
SUMMARY:Multi-Specialty Clinic for children with CdLS at Shriners Children's Salk Lake City
DESCRIPTION:The CdLS Foundation\, in partnership with Shriners Children’s Salt Lake City\, is pleased to announce a Multi-Specialty Clinic for children with Cornelia de Lange Syndrome (CdLS) on March 11\, 2026\, at Shriners Children’s Salt Lake City. This clinic provides children with CdLS and their families access to comprehensive\, coordinated medical care in one convenient location. \nTo attend\, a child must be an existing Shriners patient or be evaluated at a Shriners Children’s facility prior to the clinic date. Assistance and additional details are available below. \nThis long-standing collaboration between the CdLS Foundation and Shriners Children’s creates a unique opportunity for families to meet with multiple pediatric specialists experienced in CdLS in a single day\, helping streamline care and reduce the burden of multiple appointments. \nMedical specialties available at the clinic include: \n\nGenetics\nOtolaryngology (ENT)\nGastroenterology\nPediatrics\nNutrition/Dietetics\nSocial Work\nOrthopedics\nAudiology\nWheelchair and Seating*\nOrthotists and Prosthetists*\n\n*Consultations may include devices such as custom shoe inserts and orthotics\, braces\, seating systems for medical strollers and wheelchairs\, and other supports designed to improve mobility\, comfort\, and quality of life. \nFor more information about the CdLS Multi-Specialty Clinic in Salt Lake City or to reserve your spot\, please contact Whitney Rinaldi\, Program Director of Family Services\, at 860-676-8166.
URL:https://www.cdlsusa.org/event/multi-specialty-clinic-for-children-with-cdls-at-shriners-childrens-salk-lake-city-2/
LOCATION:Shriners Children’s Salt Lake City\, 1275 E Fairfax Rd\, Salt Lake City\, UT\, 84103\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/12/Shriners.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260402T190000
DTEND;TZID=America/Detroit:20260402T201500
DTSTAMP:20260403T183844
CREATED:20260116T173732Z
LAST-MODIFIED:20260116T173732Z
UID:9923-1775156400-1775160900@www.cdlsusa.org
SUMMARY:CdLS Foundation April Virtual Support Group for Parents
DESCRIPTION:The next CdLS Foundation Parent Support Group is scheduled for April 2\, and we’d love to welcome you. \n📅 April 2\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Bring Your Loved One \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-april-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/April-Support-Group-Bring-your-loved-one.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260410
DTEND;VALUE=DATE:20260411
DTSTAMP:20260403T183844
CREATED:20260112T160205Z
LAST-MODIFIED:20260112T160205Z
UID:9894-1775779200-1775865599@www.cdlsusa.org
SUMMARY:International Siblings Day
DESCRIPTION:International Siblings Day is a special time to celebrate the unique\, lifelong bond between brothers and sisters. Siblings of individuals with CdLS play an incredible role\, offering love\, support\, advocacy\, and friendship in truly unique ways. \nWe invite you to join us in honoring these amazing relationships by sharing photos of you and your sibling with CdLS. Be sure to tag the Foundation and use #CdLSsiblings so we can celebrate together!
URL:https://www.cdlsusa.org/event/international-siblings-day/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/2026-International-Siblings-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260411
DTEND;VALUE=DATE:20260412
DTSTAMP:20260403T183844
CREATED:20251229T192544Z
LAST-MODIFIED:20251229T193146Z
UID:9824-1775865600-1775951999@www.cdlsusa.org
SUMMARY:Adolescent and Adult Multidisciplinary Clinic
DESCRIPTION:This Foundation-managed\, free Cornelia de Lange Syndrome (CdLS) clinic is held twice each year at Greater Baltimore Medical Center (GBMC) in Baltimore\, Maryland. Led since 2001 by Foundation Medical Director Antonie Kline\, M.D.\, Director of Clinical Genetics at the Harvey Institute for Human Genetics at GBMC\, the clinic provides families with direct access to nationally recognized CdLS experts. \nThe clinic is open to individuals age 12 and older living with Cornelia de Lange Syndrome\, along with their families and caregivers. \nAttendees benefit from educational presentations and live Q&A sessions with members of the CdLS Clinical Advisory Board\, covering key medical and developmental topics\, including: \n\nBehavioral Psychology\nChild Psychiatry\nGastroenterology\nGenetics\nGynecology\nNeurology\nPediatric Ophthalmology\nSpeech and Language\nUrology\n\nThis comprehensive clinic offers families an opportunity to learn\, ask questions\, and connect with specialists experienced in the care and management of Cornelia de Lange Syndrome. \nFor more information on the clinic or to secure your spot\, contact Ashley Fernandez\, Family Service Coordinator or call 860.676.8166.
URL:https://www.cdlsusa.org/event/gbmc-cdls-clinic-426/
LOCATION:Harvey Institute for Human Genetics\, Greater Baltimore Medical Center\, 6701 N. Charles St.\, Suite 2326\, Baltimore\, MD\, 21204\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260425T100000
DTEND;TZID=America/Detroit:20260425T170000
DTSTAMP:20260403T183844
CREATED:20260220T145735Z
LAST-MODIFIED:20260220T145735Z
UID:10024-1777111200-1777136400@www.cdlsusa.org
SUMMARY:Team CdLS Walk to Fight Rare Diseases
DESCRIPTION:Join us at this year’s Denise D’Ascenzo Foundations annual Walk to Fight Rare Diseases. The event will take place at Quinnipiac University\, Burt Khan Gym at 10AM. There is plenty of free parking\, pizza truck for all participants\, magic show\, children’ activities\, musical entertainment\, and much more. Join the team\, have some fun\, meet other CdLS families all while raising awareness and funds for your CdLS Foundation. You can’t be there in person to walk you can register virtually as well. Any questions please contact Lisa Schroeder\, Events Manager at lschroeder@cdlsusa.org\n\nRegister at The Denise D’Ascenzo Walk to Fight Rare Diseases \n(registration instructions)\n\nThe Denise D’Ascenzo Foundation’s Walk to Fight Rare Diseases — JB Sports\n4/25/2026 | 10:00 a.m. ET | Quinnipiac University\, Burt Khan Gym 275 Mt. Carmel Ave Hamden\, CT US 06518
URL:https://www.cdlsusa.org/event/team-cdls-walk-to-fight-rare-diseases/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/02/denise-walklogo.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260507T190000
DTEND;TZID=America/Detroit:20260507T201500
DTSTAMP:20260403T183844
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/May-Support-Group-Future-Planning.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260509
DTEND;VALUE=DATE:20260510
DTSTAMP:20260403T183844
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/2026-CdLS-Awareness-Day.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260509T110000
DTEND;TZID=America/Detroit:20260509T150000
DTSTAMP:20260403T183844
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/09/Family-gathering-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260530
DTEND;VALUE=DATE:20260531
DTSTAMP:20260403T183844
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/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/02/2026-Family-Mega-Gathering-Header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260604T190000
DTEND;TZID=America/Detroit:20260604T201500
DTSTAMP:20260403T183844
CREATED:20260116T174255Z
LAST-MODIFIED:20260116T174255Z
UID:9927-1780599600-1780604100@www.cdlsusa.org
SUMMARY:CdLS Foundation June Virtual Support Group for Parents
DESCRIPTION:The next CdLS Foundation Parent Support Group is scheduled for June 4\, and we’d love to welcome you. \n📅 June 4\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Behavior \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-june-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/June-Support-Group-Behavior.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260613T110000
DTEND;TZID=America/Detroit:20260613T160000
DTSTAMP:20260403T183844
CREATED:20260211T202702Z
LAST-MODIFIED:20260324T142928Z
UID:10008-1781348400-1781366400@www.cdlsusa.org
SUMMARY:Southeast Family Gathering- North Carolina
DESCRIPTION:Join families from North Carolina and surrounding states for a CdLS Foundation-sponsored Family Gathering. \nGraciously hosted by the Radionov Family\, parents of Kaleb. \nJune 13\, 202611 a.m. – 4 p.m. ET \nMt. Olive UMC1082 Community RoadLexington\, NC 27295 \n*A Hoyer lift and adult changing table available at the venue.* \nBring 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). \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\, or beverage to share. \nRegister Here.
URL:https://www.cdlsusa.org/event/southeast-family-gathering-north-carolina/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2022/09/Family-gathering-header.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260702T190000
DTEND;TZID=America/Detroit:20260702T201500
DTSTAMP:20260403T183844
CREATED:20260116T174525Z
LAST-MODIFIED:20260116T174525Z
UID:9929-1783018800-1783023300@www.cdlsusa.org
SUMMARY:CdLS Foundation July Virtual Support Group for Parents
DESCRIPTION:The next CdLS Foundation Parent Support Group is scheduled for July 2\, and we’d love to welcome you. \n📅 July 2\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Healthy Living \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-july-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/July-Support-Group-Healthy-Living.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20260808T190000
DTEND;TZID=America/Detroit:20260808T201500
DTSTAMP:20260403T183844
CREATED:20260116T174839Z
LAST-MODIFIED:20260116T174839Z
UID:9931-1786215600-1786220100@www.cdlsusa.org
SUMMARY:CdLS Foundation August Virtual Support Group for Parents
DESCRIPTION:The next CdLS Foundation Parent Support Group is scheduled for August 8\, and we’d love to welcome you. \n📅August 8\, 2026\n🕖 7:00–8:15 p.m. ET\n📍 Zoom (link provided upon registration)\n💡 Topic: Bring Your Loved One \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. \n 
URL:https://www.cdlsusa.org/event/cdls-foundation-august-virtual-support-group-for-parents/
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2026/01/Aug.-Support-Group-Bring-your-loved-one.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20260813
DTEND;VALUE=DATE:20260814
DTSTAMP:20260403T183844
CREATED:20251229T204329Z
LAST-MODIFIED:20260113T180618Z
UID:9832-1786579200-1786665599@www.cdlsusa.org
SUMMARY:Multi-Specialty Clinic for children with CdLS at Shriners Children's Salt Lake City
DESCRIPTION:The CdLS Foundation\, in partnership with Shriners Children’s Salt Lake City\, is pleased to announce a Multi-Specialty Clinic for children with Cornelia de Lange Syndrome (CdLS) on August 13\, 2026\, at Shriners Children’s Salt Lake City. This clinic provides children with CdLS and their families access to comprehensive\, coordinated medical care in one convenient location. \nTo attend\, a child must be an existing Shriners patient or be evaluated at a Shriners Children’s facility prior to the clinic date. Assistance and additional details are available below. \nThis long-standing collaboration between the CdLS Foundation and Shriners Children’s creates a unique opportunity for families to meet with multiple pediatric specialists experienced in CdLS in a single day\, helping streamline care and reduce the burden of multiple appointments. \nMedical specialties available at the clinic include: \n\nGenetics\nOtolaryngology (ENT)\nGastroenterology\nPediatrics\nNutrition/Dietetics\nSocial Work\nOrthopedics\nAudiology\nWheelchair and Seating*\nOrthotists and Prosthetists*\n\n*Consultations may include devices such as custom shoe inserts and orthotics\, braces\, seating systems for medical strollers and wheelchairs\, and other supports designed to improve mobility\, comfort\, and quality of life. \nFor more information about the CdLS Multi-Specialty Clinic in Salt Lake City or to reserve your spot\, please contact Whitney Rinaldi\, Program Director of Family Services\, at 860-676-8166.
URL:https://www.cdlsusa.org/event/multi-specialty-clinic-for-children-with-cdls-at-shriners-childrens-salk-lake-city-3/
LOCATION:Shriners Children’s Salt Lake City\, 1275 E Fairfax Rd\, Salt Lake City\, UT\, 84103\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2025/12/Shriners.png
END:VEVENT
END:VCALENDAR