Home | Calendar | Español | Media Room | Shop | Contact Us
CdLS Help Lines

Bereaved Parents Resources

"As with his birth and at different times during his life, Michael’s death and all related aspects threw our family onto an emotional rollercoaster. Although naturally shy, I had found the best way to cope was to try to be brave and seek support. The end was no different. Simply sharing the events as they unfolded by phone or email brought strength and guidance from family, friends, the CdLS online support group and especially the CdLS Foundation staff.”


–Excerpt from “When Angels Take Flight: the Loss of a Loved One with Cornelia de Lange Syndrome”

The CdLS Foundation staff is here to provide guidance on the complicated journey you have ahead of you after losing a loved one with CdLS.  Staff is here to listen, honor and remember your child.  Please do not hesitate to contact one of our family service coordinators at 800-223-8355 or familysupport@CdLSusa.org

It can also be helpful to connect with others who have experienced a similar loss. The Foundation has a network of caring families who serve as grief support volunteers whom we can connect you with when you are ready.  If you would like to be matched with such a volunteer, let us know or submit the following: Click here for Connections for Grief Support form.

Resources for Parents:  
The Compassionate Friends is a nationwide non-profit organization designed to support and provide resources to families who are coping with the death of a child. 

Bereaved Parents of the USA connects grieving parents with other bereaved parents, grandparents and siblings for one-on-one support.

MISS Foundation is a volunteer-run nonprofit organization that supports people of all ages through the process of grieving the death of a child. Grieving visitors can connect with a HOPE (Helping Other Parents Endure) mentor for individualized support.

Our House provides Grief Pages which are a collection of downloadable PDF resources of grief support information that were created for everyone, suitable for children to teens to adults.

Vitas Healthcare offers a wide variety of articles about general grief and bereavement.

New York Life Foundation helps families and educators identify tools and national and regional grief supports

To find a therapist in your area:

To help understand the grief of children:
National Alliance for Grieving Children connects professionals, consumers and volunteers whose mission is to support children and teens through the grieving process.

Articles to help families and teachers understand how to support children’s grief

Children’s Developmental Stages: Concepts of Death and Responses to Grief

Guidelines for Helping Grieving Children

For Children and Teens:
The Dougy Center offers peer-to-peer support groups and resources for grieving children, teens, and families.