H-ABC Foundation
Raising funds and awareness to help find a cure for H-ABC.
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ALD Connect
At ALD Connect, our mission is to improve the health outcomes of individuals affected by adrenoleukodystrophy (ALD). By empowering patients, raising awareness, and accelerating the translation of scientific breakthroughs into better clinical care, we aim to make a lasting impact on the ALD community. Together, we are committed to revolutionizing care and driving progress toward a cure.
Canavan Foundation
The Canavan Foundation is a 501c3 not-for-profit organization dedicated to educating at-risk populations about Canavan disease and other genetic diseases and the reproductive options available to carrier couples. We encourage preconception genetic carrier screening whenever appropriate. In addition, the foundation supports research towards treatments and a cure for Canavan disease.
Mission Massimo Foundation
The Mission Massimo Foundation aims to exponentially accelerate the discovery of novel genetic variations responsible for childhood Leukodystrophies and to translate these findings into clinical treatments.
Leukodystrophy Center Resources for Professionals
Access resources for professionals from the Leukodystrophy Center at Children's Hospital of Philadelphia.
Tips for Managing Your Child’s G- or J-tube
Here are some suggestions to help you manage your child’s G/J-tube.
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.
Learning More About Children with HI and Kabuki Syndrome
A study from CHOP’s HI Center provides insights into how to best care for children with Kabuki syndrome and hyperinsulinism.