About Us

The Delaware Youth Rare Disease Initiative empowers young people to raise awareness, improve care access, and advocate for policies that support patients, families, and healthcare providers affected by rare diseases in Delaware.

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Meet the Founders

Co-Founder

Alek Lee

Alek Lee is a Junior at the Charter School of Wilmington.

Co-Founder

Manav Suresh

Manav is a Junior at the Charter School of Wilmington

Our Team

Ishaan Kolipaka - Summer Intern

Maximilian Shi

Priorities

1. Perform in-person outreach; compile and produce rare disease resources through this website.

2. Seek governmental and research partnerships to run a state-wide survey of patients.

3. Seek support for a Rare Disease Registry and insurance reform.

3. Advocate for evidence-based legislation as outlined in Rare Diseases in Delaware: An Overview

4. Petition the state P&T and DUR boards for gene therapy prior authorization criteria on the state PDL

5. Raise awareness about rare disease and provide opportunities for youth advocacy