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Working together to improve the lives of patients and families affected by Developmental Synaptopathies

 

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Participants make it possible for researchers to find new treatments, speed up diagnosis, and improve the lives of those affected by rare diseases.

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Updating Guidelines for Clinical Management of Phelan–McDermid Syndrome

A taskforce of clinicians and parents of individuals with Phelan-McDermid syndrome have collaborated to update guidelines for clinical management.

Updating Guidelines for Clinical Management of Phelan–McDermid Syndrome

Rare Research Report: August 2023

Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications.

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Rare Research Report: February 2023

Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research. 

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Learn More About Developmental Synaptopathies

Access educational materials, frequently asked questions, lectures, and more.

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