Youth-led action to support research and patients living with rare eye diseases.
At InnoYouth, we are a youth-led initiative committed to accelerating research and treatment for rare eye diseases through the power of data, community, and collaboration.
We believe young people can make a real difference in medical research — by connecting patients, researchers, and genetic data in meaningful ways.
What can we do today to help those losing their sight?
The simple, urgent question our journey began with.
Despite remarkable advances in genetic medicine, patients with rare eye diseases still face overwhelming challenges.
Most patients cannot access — or make sense of — their own genetic and diagnostic data.
Patients and researchers often operate in silos, limiting collaboration and innovation.
Even when data is available, few specialists exist who can decode rare genetic variants.
These gaps delay diagnosis, hinder treatment, and leave families in uncertainty. We're here to change that — one donor, one connection, one story at a time.
A patient-centered precision medicine platform founded by a legally blind tech executive and a medical scientist from Seoul National University. They pioneer tools for genetic interpretation and patient-data matching.
A rare eye disease awareness and advocacy initiative based in Korea, focused on early diagnosis and emotional support for pediatric patients and their families.
Visit eyelovechild.com →Our work bridges the gap between patients, researchers, and data — all through meaningful action.
We invite individuals with rare eye diseases or genetic test results to contribute data that can advance research.
Digital campaigns, events, and storytelling projects that raise awareness about rare diseases and the power of data.
Volunteers design infographics, videos, posters, and social content to educate the public and drive engagement.
We host local and global events, collaborate with schools and clubs, and empower students to lead their own outreach.
We help structure de-identified data (e.g. OMIM extraction) for researchers and connect them with potential donors.
With consent, we share personal stories of patients and donors to humanize data and inspire action.
Behind every data point and every post is a real person — and a ripple of change. Here's what we're building together.
Whether by donating data, volunteering your time, or partnering with us — every action moves research forward.
Support research by sharing your genetic or medical records. All data is de-identified and used solely for research.
Become a Data Donor →Join our outreach team and help us raise awareness — through design, events, storytelling, and more.
Volunteer with Us →InnoYouth is a youth-led nonprofit organization based in Orange County, California, dedicated to connecting rare eye disease patients with researchers and building a virtuous cycle of genetic data sharing and research.
Through technology, creativity, and education, we transform raw data into human-centered stories — closing the gap in medical information and creating a bridge of hope for rare disease patients around the world.
We build a data-driven research ecosystem for rare eye diseases, led by youth who serve as connectors among patients, researchers, and society. We do this by:
We envision a world where data is not just numbers, but a powerful tool for empathy and action.
We dream of a virtuous cycle where personal genetic information fuels research, and the resulting knowledge brings renewed hope to patients and families.
What began in developing countries like Mongolia is expanding into a global effort — enabling borderless research collaboration and reducing disparities in access to healthcare.
Ashton H. Jung, a high school student at Troy High School in Fullerton, California, founded InnoYouth with a deep passion for STEM and a strong sense of empathy for individuals with rare vision disorders.
Through sports like water polo and archery, Ashton developed discipline and focus — qualities that shaped a belief that connection and change can begin with data. With this vision, Ashton launched InnoYouth to amplify global voices and create meaningful impact through the power of youth and science.
Help us build a youth-powered ecosystem for rare disease research. Every donor, volunteer, and story moves us forward.
InnoYouth is a youth-led nonprofit that connects rare eye disease patients, researchers, and genetic data to support research and raise awareness. We drive change through the power of data and storytelling.
Anyone who has been diagnosed with a rare eye disease or has undergone genetic testing is welcome to participate. All data is de-identified and used solely for research purposes.
With proper consent, donated genetic information is cleaned and structured, then shared with trusted researchers to support diagnosis and treatment development.
You can join us as a volunteer, make a donation, or simply spread the word. Everyone has a role to play in making an impact.