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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.

PMSF logo

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 Foundation logo

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.