The Phelan-McDermid Syndrome Foundation is sharing an important update with our community: Neuren’s Phase 3 clinical trial of NNZ-2951, known as the “Koala” study, is now active and listed on clinicaltrials.gov.
The Phelan McDermid Syndrome Foundation (PMSF) today announced the appointment of Robbie Baker, a seasoned nonprofit executive and successful fundraiser, as its new Chief Executive Officer.
This one-page information sheet provides a brief overview of Phelan-McDermid syndrome, including its genetics, symptoms, treatments, and how the Phelan-McDermid Syndrome…
Testes Genéticos de Seguimento na Síndrome de Phelan-McDermid (PMS)
Este diagrama identifica as áreas de especialidades médicas que podem ser úteis na avaliação de uma pessoa diagnosticada com a Síndrome de Phelan-McDermid (PMS), as condições que podem estar presentes, os exames que podem ajudar no diagnóstico e a abordagem multidisciplinar.
The Inaugural Meeting of the Consortium for Autism, Genetic Neurodevelopmental Disorders, and Digestive Diseases (CANDID) was held in 2022 to gain…
A synopsis of the 2024 PMSF Family Conference in the words of Michael Schön, MD, Institute for Anatomy and Cell Biology, Ulm University. This summary was created first in German for the German Phelan-McDermid community, then translated to english. It summarizes the speaker presentations as well as the family and community sessions.
Learn more about the session topics in the 2024 Phelan-McDermid Syndrome Foundation (PMSF) Family Conference agenda. These sessions range from research discoveries, research studies, medical care guidelines and a myriad of topics about living with Phelan-McDermid syndrome.
Join us VIRTUALLY at the 2024 Phelan McDermid Syndrome Foundation Family Conference. Livestream is the next best thing to being there! The agenda is full of offerings in the three tracks titled CARE, CONNECT and CURE, ranging from research and science, clinical care and caregiver support topics that all help to improve the lives of those affected by Phelan-McDermid syndrome. If you have questions, contact us at conference@pmsf.org.
The Phelan-McDermid syndrome community has experienced profound grief and concern over the deaths of some of our beloved children and adults.…
