DLG4 Announcements & News

We're reaching out to our U.S.-based families and asking them to sign up for Citizen Health to help power digital natural history studies for our community!

By participating, you will be part of something truly meaningful: a chance to contribute to vital research that could change the future of care for so many families like ours.

Our goal is to have at least 25 new patient families join by November 30 so that we can generate our first core natural history dataset with Citizen!

Sign up here: www.citizen.health/partners/shine-syndrome

We've recently started hosting a series of live webinars on various scientifc topics for the DLG4 SHINE patient community.

Keep an eye on our Facebook page for the details of the next live webinar and check out our YouTube channel to see the recording of past webinars.

On July 17th, 2024, the Foundation held a Patient-led Listening Session with the Food and Drug Administration.

The objective of the session was to provide FDA staff with an opportunity to hear about the wide spectrum of experiences and perspectives of various patients and families living with DLG4 SHINE in order to understand the complexity of the disease and its impact on their daily lives, what they would consider meaningful treatment outcomes, and their risk tolerances to achieve said outcomes.

With a few successful years of advocacy and research efforts, the fast increasing number of diagnosed patients, and the lucky addition to the board of a Mom with marketing expertise we have decided to rebrand in order to professionalize and grow the foundation further.

Click on About to read more about the history of the Foundation and the reasoning behind our meaningful choices.