Patient Advocacy Groups
Patient advocacy groups specializing in developmental synaptopathies are here to help you. They are devoted to providing support, resources and services for patients and families. Join these groups to help yourself, your family, and other patients.
Cure SYNGAP1
Our mission is to improve the quality of life of SYNGAP1 patients through the research and development of treatments, therapies and support systems. Completely family led, CURE SYNGAP1 is a leading funder of SYNGAP1 research. CURE SYNGAP1’s mantra is Collaboration, Transparency & Urgency.
Phelan-McDermid Syndrome Foundation
Aims to improve quality of life of those affected by Phelan-McDermid syndrome (PMS) by providing support, accelerating research, and raising awareness.
PTEN Hamartoma Tumor Syndrome Foundation
Funds research, provides education, and supports those affected by PTEN hamartoma tumor syndrome (PHTS).
PTEN Research Foundation Ltd
Funds and facilitates global research that will lead to new and better treatments for PTEN hamartoma tumor syndrome.
TSC Alliance
Aims to improve the lives of people with tuberous sclerosis complex (TSC) by driving research, improving care and access, and advocating for all.