Test

Note: If more than one of your children has been diagnosed with MED13L, please submit this form once for each child so they are registered individually.

https://med13l.org/test/

Speech Development

Speech delays MED13L Syndrome: The impact on speech development Speech challenges are one of the most significant hurdles for individuals with MED13L. Many experience severe motor impairments that make communication difficult. By focusing on speech development, we aim to raise awareness, share effective tools, and support families—so that every voice...

https://med13l.org/speech-development/

Cerebral Palsy Research Network

The CP Research Network is the largest and most comprehensive network of hospitals and community members working together to improve health outcomes for people with CP. We host both community and clinical registries to gather robust and comprehensive data for research. We focus our research and consumer educational content on the health...

https://med13l.org/partner/cerebral-palsy-research-network/

Rosamund Stone Zander & Hanjoerg Wyss Translational Neuroscience Center

The Rosamund Stone Zander and Hansjoerg Wyss Translational Neuroscience Center (TNC) is led by an Executive Team that includes Mustafa Sahin, MD, PhD, Managing Director; Kira A. Dies, ScM, Executive Director; Lisa Prock, MD, MPH, Clinical Director; Stephanie Jo Brewster, MS, Director, Clinical Research Operations; Elizabeth Buttermore, PhD, Director, Translational In Vitro Models; Maya Chopra, MD, Director of Translational Genomic Medicine and Jed...

https://med13l.org/partner/rosamund-stone-zander-hanjoerg-wyss-translational-neuroscience-center/

Boston Children’s Hospital

At Boston Children’s Hospital, we combine compassion, innovation, and world-leading expertise to care for children of all ages and conditions—from the rarest diseases to the most common injuries. Our specialists deliver groundbreaking treatments, advance pediatric research, and provide hope to families from across the globe.

https://med13l.org/partner/boston-childrens-hospital/

Agenda

The Alliance of Genetic Etiologies of Neurodevelopmental Disorders and Autism is a collaboration of many patient advocacy groups representing rare genetic conditions associated with neurodevelopmental disorders, together with scientists and researchers who focus their efforts on understanding the mechanisms of these genetic variants and helping families affected by them. ​ The mission of AGENDA is to improve...

https://med13l.org/partner/agenda/

BJB Foundation

https://med13l.org/partner/bjb-foundation/

University of South Carolina

Remarkable Research at USC The University of South Carolina is the state’s most comprehensive health sciences research and teaching institution. Our researchers are working to solve some of the Palmetto State’s biggest health issues like stroke, autism and infectious diseases while preparing the next generation to tackle tomorrow’s challenges.

https://med13l.org/partner/university-of-south-carolina/

UC San Francisco

At UC San Francisco, we are driven by the idea that when the best research, the best teaching and the best patient care converge, we can deliver breakthroughs that help heal the world. Excellence is in our DNA. From genomics and immunology to specialty care for women and children, UCSF brings...

https://med13l.org/partner/uc-san-francisco/

NeuCyte

NeuCyte is a biotech company focused on generating quality iPSC-derived neural cells to develop treatments for neurological disorders. Our vision and approach span many biopharmaceutical sectors as our technology is utilized to find treatments and solutions for AD, ALS/FTD, rare diseases and disorders, epilepsy, autism and other neurodegenerative diseases. ​​​...

https://med13l.org/partner/neucyte/