National Urea Cycle Disorders Foundation
The National Urea Cycle Disorders Foundation provides information and resources to those affected by urea cycle disorder (UCD).
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Showing 1 - 10 of 23 results
Organic Acidemia Association
The Organic Acidemia Association funds research and provides support for individuals affected by organic acidemia metabolic disorders.
United Mitochondrial Disease Foundation
The United Mitochondrial Disease Foundation promotes research for and education about mitochondrial disorders to those affected by them.
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.
NJ Statewide Parent Advocacy Network
The website offers families and professionals information, resources, support and advocacy assistance.
How Much Phe?
"A comprehensive diet-management system for PKU with phe/pro/exchange and calorie values for more than 7,000 foods. Easily record, chart, and export your intake and blood levels."
The Mid-Atlantic Connection for PKU and Allied Disorders
MACPAD is a network of individuals and families touched by phenylketonuria and allied disorders. Their website provides educational resources, newborn screening information, support groups, upcoming events, and more.