International Rett Syndrome Foundation
The International Rett Syndrome Foundation (IRSF) is laser-focused on creating a world without Rett syndrome. For nearly 40 years, we have fueled life-changing advancements in research toward a cure.
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Rett Syndrome Primary Care Guidelines
The Rett Syndrome Primary Care Guidelines provide suggested visit schedules by clinical area of assessment, specific concerns to look for and timelines for follow up appointments. Download today to ensure the best care for your child.
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.
NINDS Rett Syndrome Information
The mission is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease for all people.
Virtual Driving Assessment: Preparing Teens to Drive Safely
Simulated driving assessments being piloted at select CHOP Primary Care locations gauge a teen’s ability to drive safely and avoid crashes.