Visit Home and Community Services Information System Website HCSIS is a tool to locate services and providers. This directory is not comprehensive and does not necessarily reflect the availability of services. Use with your Supports Coordinator to determine which services may be best for your family.
Visit Biobanking of Rett Syndrome and Related Disorders Website The purpose of this study is to advance understanding of the natural history of Rett syndrome (RTT), MECP2-duplication disorder (MECP2 Dup), RTT-related disorders including CDKL5, FOXG1, and individuals with MECP2 mutations who do not have RTT. Samples with DNA will be collected. Children’s Hospital of Philadelphia … Read More
Clinic Name: Rett Syndrome Clinic Medical Director: Eric Marsh, MD, PhD Clinic Address: Beurger Center for Advanced Pediatric Care – 3500 Civic Center Blvd., Philadelphia, PA 19104 Clinic Phone: (267) 426-1242 Clinic Email: [email protected] Part of the IRSF Center of Excellence Network CLINIC WEBSITE
Maureen Charamella, volunteer Family Empowerment Representative, Springfield [email protected] 1-610-766-2930 Julie Peden, volunteer Family Empowerment Representative, [email protected] 1-814-657-5005
Samantha Brant – Family & Community Engagement Manager, International Rett Syndrome Foundation [email protected] 1-913-221-8157