The Invisible Investors

WODC 2026 · Boston, MA The InvisibleInvestors Patient foundations pay for some of the riskiest science in medicine. They are rarely credited and almost never repaid. Rowan Dias built the case for why that should change. Research and poster by Rowan Dias View the poster Download the A0 PDF Poster...

https://med13l.org/the-invisible-investors/

Community Census

MED13L Foundation — Patient Registry & Genetic Report Submission MED13L Foundation Patient Registry & Genetic Report Submission This form registers your family with the MED13L Foundation and allows you to securely submit a genetic report. All information is stored securely and accessed only by authorized Foundation staff. Secure & HIPAA-Compliant...

https://med13l.org/census/

Biospecimen Collection – Combined Brain Road Show

The MED13L Foundation partners with the Combined Brain Road Show to bring biospecimen collection—blood, stool, and saliva—directly to rare disease family meetings across the country. A convenient way to participateContribute to MED13L research in a city near you. The MED13L Foundation partners with the Combined Brain Road Show to bring...

https://med13l.org/research-opportunity/biospecimen-collection/

Contribute to MED13L research in a city near you

A convenient way to participate Contribute to MED13L research in a city near you. The MED13L Foundation partners with the Combined Brain Road Show to bring biospecimen collection—blood, stool, and saliva—directly to rare disease family meetings across the country.Fully trained staff collect samples onsite, allowing MED13L families to participate in...

https://med13l.org/contribute-to-med13l-research-in-a-city-near-you/

MED13L-related disorder characterized by severe motor speech impairment

https://med13l.org/publication/med13l-related-disorder-characterized-by-severe-motor-speech-impairment/

Characterizing key correlates of sleep problems across rare neurodevelopmental genetic disorders

https://med13l.org/publication/characterizing-key-correlates-of-sleep-problems-across-rare-neurodevelopmental-genetic-disorders/

Challenging Behavior Domains in Individuals With Neurodevelopmental Genetic Syndromes: The Role of Psychological Features

https://med13l.org/publication/challenging-behavior-domains-in-individuals-with-neurodevelopmental-genetic-syndromes-the-role-of-psychological-features/

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/