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We are excited to release updates to our Pharmacologic Recommendations, which were recently finalized by our Phelan-McDermid Syndrome Neuropsychiatric Consultation Group…
Name: Denise CrodenTime Served on the Board: Since June 2021Board Role: PresidentDenise’s journey with PMSF began as an extension of her…
As we wrap up 2024, we’re thrilled to share a special gift with our PMSF community: access to all the recordings…
At the Phelan-McDermid Syndrome Foundation, we are committed to making resources accessible to all families in our community. That’s why we’re…
A Message from Our CEO: Preparing for a New ChapterIt is with both gratitude and a sense of celebration that we…
Important Links:Updated Community Letter & FAQ from Jaguar Gene Therapy (11/5/24)Updated information is highlighted in blueJAG201 Clinical Study Record on ClinicalTrials.govJaguar's…
In January 2023, PMSF launched its research grants program to fund highly motivated scientists studying Phelan-McDermid syndrome. Our goal was to…
Over the past decade, more than 59,000 PHELAN LUCKY shirts have found homes in 33 countries across the globe. This has not only…
A large percentage (~75-80%) of people with a Phelan-McDermid syndrome diagnosis also have a diagnosis of autism spectrum disorder. This article…
We are very pleased to announce that the Foundation is bringing Dr. Tesi (Teresa) Kohlenberg on part time to assist our Family Support Specialist, Carla D’Imperio, in helping families whose loved ones have neuropsychiatric illness.