Every person diagnosed with Phelan-McDermid Syndrome is different; caregivers are faced with making choices, often on a daily basis, on which path to take to create the best life possible for their loved one. PMS Pathways Education Series is designed to assist caregivers by providing educational resources to assist with making those life choices for a child or adult diagnosed with Phelan-McDermid Syndrome. Pathways offers a wide range of medical, research, therapeutic and caregiving topics.
PMSF and the Seaver Autism Center at Mount Sinai are collaborating to provide a FREE service to help doctors care for people with PMS who have challenging neuropsychiatric or behavioral problems. Physicians can initiate ECHO consultations by submitting an Intake Form. Patients can assist physicians by partially completing the form and presenting it to their physician. Please note that some physicians have been successful using billing code 99367 to bill their consult time. The Phelan McDermid Syndrome-Neuropsychiatric Consulting Group (PMS-NCG) goals include improving the care of neuropsychiatric disorders in children and adults with Phelan-McDermid Syndrome and increasing the number of doctors who are equipped to handle these complex problems. Please remember the Intake Form MUST be submitted to the ECHO Consulting Group by the Physician, not by the patient.
This beautiful, short video will give you a better understanding of Phelan-McDermid Syndrome and the strength, love and perseverance of the families raising a child born with this rare condition.
If you shared, posted or commented; proof-read posts, emails, or letters, contacted a celebrity, school or business, lent an ear, nudged your friends, bought a shirt, raised awareness by wearing a shirt, bought a ton of shirt or donated. We are so incredibly grateful for your support and enthusiasm. We are Phelan Lucky!! 8,075 shirts sold, $92,140 raised
The purpose of this registry is to consolidate information from individuals with Phelan-McDermid Syndrome into a single database, which will be utilized by researchers to understand Phelan-McDermid Syndrome better. Sharing your medical data will make a world of difference.
Many families ask if there is a difference between joining the Foundation and enrolling in the registry. PMSF currently has 1949 individuals worldwide who interact with the Foundation through membership and/or participation in the registry.