2024 PMSF International Family Conference Announcement
The PMSF International Family Conference was established in the year 2000 and has since been planned biennially on even years. As you know, COVID…
Information about the Phelan-McDermid Syndrome Foundation (PMSF)
Applying for an ICD Code for Phelan-McDermid syndrome
https://youtu.be/fRDlkex2Kjg PMSF has applied to the CDC for an ICD Code for Phelan-McDermid syndrome. Our Scientific Director shares why this is…
New clinical trial results of Insulin-like Growth Factor-1 (IGF-1) in Phelan-McDermid syndrome
Results from a study testing the safety and feasibility of using growth hormone (GH) as a treatment in children with Phelan-McDermid syndrome has just been published.
Enrollment is currently open for Phase II of the Phelan-McDermid syndrome (PMS) Natural History Study
The Natural History Study is funded by NIH and the goal is to help medical professionals study PMS and how it progresses over time. This information is essential for developing clinical guidelines, identifying research priorities, and assessing the effectiveness of the clinical intervention.
A pilot study of Growth Hormone in children with Phelan-McDermid syndrome
Results from a study testing the safety and feasibility of using growth hormone (GH) as a treatment in children with Phelan-McDermid syndrome has just been published.
Phelan-McDermid Syndrome Foundation Offers Travel Assistance for Clinical Research Studies
This Phelan-McDermid Syndrome Foundation Travel Assistance Program is designed to assist patients and families with the cost of travel expenses associated with the clinical research study regarding a Phelan-McDermid syndrome diagnosis.
PMSF Scientific Advisory Committee Revisits Definition of Phelan-McDermid Syndrome
The Phelan-McDermid Syndrome Foundation Scientific Advisory Committee has proposed a new classification system for Phelan-McDermid syndrome in an important new publication.
Phelan-McDermid Syndrome Website Update
by Diane Linnehan, PMSF Director of Operations The new PMSF website launched on August 11th! With the help of our amazing…
Team Matthew Luis
Florida Family Hosts Virtual Eventby Martha Castillo We are grateful that the Castillo Family host a yearly fundraiser in support of the…
Phelan-Lucky Success
by Jen Randolph Thank you to everyone who helped to make this St. Patrick’s Day another incredible day of awareness for…