National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) provides advocacy, education and other services to improve the lives of all people affected by rare diseases.
Caring for your child
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Ethics Consultation Service
When you face an ethical dilemma concerning your child's care, our staff can help. We are available to support you and the healthcare team as you work together to make important decisions about your child's treatment.
Many ways to say thank you
Patients and families have asked how they can show their appreciation to CHOP. Personal gifts are never expected, and CHOP policy does not allow staff to accept personal gifts. There are many ways for families to give back. Learn how.
Social media guidance for families
This guide for families shares helpful information about issues that may arise when families are using social media to connect with CHOP staff members. Learn more.
Photo/video guidance for families
Families often want to capture their child’s CHOP journey by taking photos or videos. The Department of Medical Ethics offers helpful guidance around patient and staff privacy at CHOP when taking photos or videos. Follow these guidelines.
Cornelia de Lange Syndrome Foundation Inc.
The Cornelia de Lange Syndrome Foundation is a nonprofit organization providing families and caregivers with a wealth of support, services, education and information about Cornelia de Lange syndrome (CdLS).