Our strength comes from our community standing by each other. We can connect you with other CdLS families in your region who are facing similar challenges.
Family Service Team
Our caring and knowledgeable Family Service Coordinators provide individuals with CdLS and their families a wealth of services, support and information –– most of which are at no cost. Calls placed to our support team are answered by caring professionals who listen, answer questions based on years of experience and offer individualized support over the phone and via email.
Navigating Health Care Systems
Ensuring your loved one with CdLS gets the care they need can seem like a full-time job. There are multiple care systems to understand, and it can quickly become confusing. But we are here to help.
Transitioning into Adulthood
Through advances in research, treatment and understanding of CdLS, our children are often living longer and fuller lives than ever before. In fact, more than 50% of the families the CdLS Foundation now serves has a son or daughter who is age 18 and older. The CdLS Foundation offers all kinds of support and resources to help you and your loved one make this transition as fulfilling and successful as possible.
Ask the Experts
Parents, caregivers, healthcare providers and teachers, often have questions and concerns about the care and well-being of individuals with CdLS.
Our Ask the Expert service enables users to email their questions for response from members of our Clinical Advisory Board and Professional Development Committee.
Whether you’re seeking reassurance about development, having concerns about medical issues or questioning best practices for communication, no question is too big or small.
A family gathering is a wonderful opportunity to meet with other families and share stories, resources, and information. Each year, the Foundation sponsors and our families and volunteers host gatherings throughout the country. When possible, a member(s) of the Foundation’s Clinical Advisory Board or Professional Development Committee attend to consult with families.
For more information, email familyservicesteam@CdLSusa.org.
The Foundation is encouraging, provides resources and guidance, and always goes beyond expectation to meet the needs of the CdLS families. The amazing staff is knowledgeable and resourceful.”
CdLS Clinics provide families with an invaluable head-to-toe evaluation by a full complement of experts—all in one day. Currently, there are five CdLS Clinics in the United States: The Multi-disciplinary Clinic for Adolescents and Adults at Greater Baltimore Medical Center; the Center for CdLS and Related Diagnoses at Children’s Hospital of Philadelphia (CHOP); Shriners Hospital for Children-Salt Lake City, UT; St. Louis Children’s Hospital in St. Louis, MO; and Boston Children’s Hospital, Cornelia de Lange Syndrome
(CdLS) and Related Disorders Clinic.
Adults with CdLS
We understand that adults with CdLS have special needs and concerns. Ask the Expert enables you to submit questions to experts in the fields of medicine, therapy and education. The Foundation also can connect you with other adults with CdLS in your region who are facing similar challenges –– so you never feel alone. You also may consider joining the CdLS Empowerment Team, a group of individuals with CdLS who are 18 years and older. This supportive and lively Team encourages relationship building and resource development specific to the needs of the adult community.
The Foundation has a wealth of resources that will assist in any situation.
Since Foundation staff can’t always be accessible by phone in an emergency, these materials provide guidance to medical personnel during critical times.
From our earliest days, a hallmark service of the CdLS Foundation has been our wide range of communication materials designed to keep our community informed and connected. Publications such as Reaching Out ensure that individuals, families and professionals stay up-to-date on issues relevant to the health, well-being and future of all of us.
At each age, individuals with CdLS have specific medical, educational and social needs. Each individual progresses at his/her own rate, and parents of children with CdLS often can expect a slower rate of physical and cognitive development when compared to their child’s peers. Treatment guidelines highlight routine care for individuals with CdLS at different ages, including infancy, early and late childhood, adolescence and adulthood.
The CdLS Foundation staff is here to provide guidance on the complicated journey after losing a loved one with CdLS. Our staff is here to listen, honor and remember your loved one.
National Family Conference
Our biennial National Family Conference provides education and support to families of individuals with CdLS. Attendees receive free consultations; attend workshops; and have opportunities to meet other families facing similar challenges.
The CdLS Foundation has resources that aid and support individuals with CdLS and their families through challenging life issues or questions that may arise. Resources include state resource guides, our national family map, information materials in Spanish, medical cards and the CoRDS registry.
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