Read All About It!
This page is your source for all of the latest news and blog posts about Phelan-McDermid syndrome (PMS).
Join the PMSF membership to receive our emails and newsletter, it is free to join.
PMS Medical Advisory; Catatonia and NMS
Important Message from our Medical Advisory Committee November 7, 2022 From: Alex Kolevzon, MD, PMS MAC chairperson; William Bennett, Jr, MD, MS; Elizabeth Berry-Kravis, MD,
Family Support Update
There are some big things happening in the world of Family Support! Our Family Support Specialist, Carla D’Imperio, is working on improving our Family Support Strategy by
Join us for a Patient-Focused Drug Development meeting with the FDA!
Save the date! November 8, 2022, 10 am – 3 pm ET (Please note this is election day in the U.S. Please vote early!) The
Current Clinical Trial Recruitment Announcements in Phelan-McDermid syndrome
Note: The PMSF circulates information but does not promote individual clinical trials. Deciding to enroll in a clinical trial is a personal decision. Families should
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 concerns and uncertainties caused
Applying for an ICD Code for Phelan-McDermid syndrome
PMSF has applied to the CDC for an ICD Code for Phelan-McDermid syndrome. Our Scientific Director shares why this is important for rare diseases like
CANDID Conference Resources
Topics this month in the PMSF Research Roundup: Assessment tool adapted to be more specific to PMS to be used in a clinical trial, Assessment tool adapted to be more specific to PMS to be used in a clinical trial, Assessment tool adapted to be more specific to PMS to be used in a clinical trial, Assessment tool adapted to be more specific to PMS to be used in a clinical trial.
PMSF Research Roundup: July 2022
Topics this month in the PMSF Research Roundup: Assessment tool adapted to be more specific to PMS to be used in a clinical trial, Assessment tool adapted to be more specific to PMS to be used in a clinical trial, Assessment tool adapted to be more specific to PMS to be used in a clinical trial, Assessment tool adapted to be more specific to PMS to be used in a clinical trial.
PMSF Research Roundup: May 2022
Do you wonder how a research publication affects your loved one or the field of Phelan-McDermid research? The Research Roundup is a summary of significant
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.
PMSF Research Roundup: April 2022
Do you wonder how a research publication affects your loved one or the field of Phelan-McDermid research? The Research Roundup is a summary of significant
Events Calendar
Phelan-McDermid Syndrome Awareness Day #PMSAD
International Day of Persons with Disabilities
Phelan Lucky sets sights on $1 Million Goal
Phelan-McDermid Syndrome Awareness Day #PMSAD
International Day of Persons with Disabilities
Phelan Lucky sets sights on $1 Million Goal
Phelan-McDermid Syndrome Awareness Day #PMSAD
International Day of Persons with Disabilities
Phelan Lucky sets sights on $1 Million Goal
Phelan-McDermid Syndrome Awareness Day #PMSAD
International Day of Persons with Disabilities