The CdLS Blog
Protected Tomorrows: Parent University
Protected Tomorrows will continue to provide their free Parent University webinars. If you have time to listen to the prior classes while you are staying in place at home, consider this an opportunity to do some planning. They look forward to helping you move forward...
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Resources from CdLS Experts
With social distancing, school closures and many other essential services being closed due to COVID-19. We have compiled a list from our CdLS experts on in-home therapies that you can do with your loved ones to ensure that they are still working on their well-being....
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COVID-19 CdLS Foundation Update
Updated: 3/27/2020 3:52 PM We have been able to gather more information regarding CdLS and COVID-19. "Individuals with CdLS and immune deficiency have "antibody immune deficiency". Antibodies are not a critical part of the immune system necessary for fighting...
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Ways to Relax at Home
Having your loved ones home with you for the past few weeks can be stressful. Schedules have changed, home learning is a new and stressful process, therapies are different and you are holding it together. You rock! However, at the end of the day, you are also drained....
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Free Webinar Announced – A Rare Response: Addressing the COVID-19 Pandemic
Are you a rare patient or caregiver with concerns related to the COVID-19 outbreak? Do you need strategies for coping, staying healthy and reducing anxiety during this uncertain period? Please join NORD for a special webinar featuring Dr. Marshall Summar, Chief,...
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Fun Activities to do at Home with Your Kids
With schools closing and stay at home orders are being put into place, the CdLS Foundation wants to make sure the community has plenty of activities to do with being at home. The staff has found some pretty great ideas to help offset boredom and help...
read moreA Message on Gene Therapy
To all our member families, We want to address the issue of Cornelia de Lange Syndrome and gene therapy, both to dispel any rumors that have been circulating and to paint a realistic picture of where things stand right now. Gene therapy is a recent advance in the...
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CdLS NATIONAL CONFERENCE UPDATE
In light of the growing public health concern around COVID-19 and the global potential for public transmission, we have a responsibility to the CdLS community to minimize the risk associated with spreading the virus.
read moreRoberts Individualized Medical Genetics Center outlines centralized genetic testing model
Philadelphia, February 26, 2020 - The Roberts Individualized Medical Genetics Center (RIMGC) at Children's Hospital of Philadelphia (CHOP) launched in 2014 as a first-of-its-kind system to help families navigate the complex process of genetic and genomic testing and...
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The CdLS Foundation Longtime Volunteer Receives Rare Impact Award from NORD!
Norm Winnerman, retired Danbury High School teacher and Athletic Director, and valued member of the Cornelia de Lange Syndrome (CdLS) Foundation will be receiving the Rare Impact Award. The National Organization for Rare Disorders (NORD) will be honoring all...
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