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.
We have breaking news! Jaguar Gene Therapy has received approval from the FDA to conduct a gene therapy clinical trial in Phelan-McDermid syndrome.
This is a major milestone for our community and for drug development in Phelan-McDermid syndrome! This will be the first trial aiming to target genetic underpinnings of Phelan-McDermid syndrome.
*last updated on 2/5/25* GEODE (Gathering Evidence for Optimizing Decisions) Study Research team: Boston University’s Center for Autism Research Excellence, Dr. Ben Scott Type of
Over the past decade, more than 59,000 PHELAN LUCKY shirts have found homes in 33 countries across the globe. This has not only significantly increased awareness for
We are thrilled to invite you to join us in celebrating a momentous milestone – the 70th birthdays of two INCREDIBLE women who have made
A large percentage (~75-80%) of people with a Phelan-McDermid syndrome diagnosis also have a diagnosis of autism spectrum disorder. This article explains why these two
by: Jen Randolph, PMSF Member & Donation Coordinator and Creator of Phelan-Lucky. THE WAIT IS OVER! 🍀 DATES: July 31st thru August 22nd The highly
by: Ronni Blumenthal, Phelan-McDermid Syndrome Foundation CEO. Save the Date for the 2024 Phelan-McDermid Syndrome Foundation International Family Conference We are so excited to announce
SHANK3 is a gene that is important for the development and function of the nervous system. Genes are like instruction manuals in our bodies that
PMSF announced a research grants program in January 2023 to provide funding to highly motivated scientists studying Phelan-McDermid syndrome. Our goal is to accelerate exciting
Registration is open for our first Phelan-McDermid Caregiver Support Group. We are thrilled to invite you to register for our new Caregiver Support Groups. These groups will be a time for Phelan-McDermid syndrome caregivers to share their experience in a welcoming and supportive group setting.
What is an ICD code? An ICD code is essentially a label, or classification, that goes into a patient’s medical record. It can notate things
What was the event? PMS mom and PMSF rep Anna Williams participated at an annual Epilepsy Foundation Research Roundtable in Washington D.C. on March 24th.
