Rally for Research

In 2020 we have worked hard on developing and expanding committees and programs that will help provide guidance and resources for families affected by Dup15q Syndrome. As we turn the corner into 2021, we are expanding our research and the search for targeted treatments in Dup15q Syndrome.

“There has never been progress in any RARE disease without the participation of the patient community. Dup15q Alliance is taking the next steps to drive progress in research and targeted treatments for Dup15q Syndrome.” – Vanessa Vogel-Farley

Register for the LADDER Database

The Dup15q Alliance is excited to announce the launch of a new program designed to help advance research and clinical service for individuals living with Dup15q syndrome! Linking Angelman and Dup15q Databases for Expanded Research (LADDER) will allow information...

EEG Database

In order to support research of brain development and activity in as many dup15q syndrome patients as possible the Dup15q Alliance has created an electroencephalogram (EEG) and magnetic resonance imaging (MRI) storage system that families can directly upload...

ARCADE and ENDYMION Studies

ARCADE Study ARCADE is a Phase 2 open-label, signal-finding pilot study designed to inform the potential for future development of soticlestat in CDD and Dup15q. The study enrolled 20 patients, ages 2 to 55 years, with refractory epileptic seizures associated with...

A Rare Condition Survey

About this SurveyThis survey is being conducted by The Mighty on behalf of a biopharmaceutical company. The purpose of the survey is to learn more about the experiences of patients and caregivers living with rare conditions. This survey is completely voluntary, and...