Medical Advisory – Reaction to Psychiatric Medications
It has come to the attention of the PMS Medical Advisory Committee that many individuals with PMS have significant difficulty tolerating…
Medical Advisory – Very Rare Leukodystrophy
The Phelan-McDermid Syndrome (PMS) Medical Advisory Committee would like to inform the patient community and the providers who care for them about two very rare disorders that may occur with PMS, and which are associated with significant developmental regression in early childhood. Developmental regression is known to occur in children and adolescents with PMS.
Medical Advisory – Behavior Therapy
It has come to the attention of the PMS Medical Advisory Committee that some individuals with PMS have challenges sustaining funding for behavioral therapy and related services if children are deemed to not be making adequate gains. For this reason, we wanted to provide the following guidance that we hope will inform discussions of appropriate interventions.
Medical Advisory – Anesthesia
It has come to the attention of the PMS Medical Advisory Committee that some individuals with PMS experience significant adverse reaction to anesthesia in the context of medical procedures (e.g., dental; imaging).
Understanding Clinical Research
Clinical trials are conducted to collect data to evaluate the safety and benefit (efficacy) of a new drug in development, typically…
Research Roundup August 2021
Do you wonder how a research publication affects your loved one or the field of Phelan-McDermid research? The Research Roundup is…
Cómo entender un informe genético – español
Leer y comprender su informe genético es como leer un idioma extranjero. A menudo, el informe se presenta de una manera…
How to Read Your Genetic Report
Reading and understanding your genetic report is like reading a foreign language. Often the report is presented in a way that…
Current Research
Presentation slides from the 2017 PMSF Stanford Mini-symopsium