2025 HARVARD UNIVERSITY
RARE DISEASE HACKATHON
MARCH 1-2, 2025
SPONSORED BY
RARE DISEASE MATTERS
In the United States, a rare disease is defined by the Orphan Drug Act as a condition affecting less than 200,000 people. To date, over 10,000 distinct rare diseases have been identified; while some, like amyotrophic lateral sclerosis or ALS (popularized by the Ice Bucket Challenge) or progeria (often referred to as the "Benjamin Button disease"), may be familiar, many rare diseases remain largely unknown to the general public. Despite their rarity individually, these conditions collectively impact an estimated 30 million Americans, highlighting the significant yet often overlooked burden of rare diseases. Our hackathon aims to foster an environment where participants can innovate data-driven solutions, driving meaningful advancements in the field of rare diseases.
RARE DISEASES ARE A SERIOUS PUBLIC HEALTH ISSUE
On average, it takes seven years for rare disease patients to receive an accurate diagnosis. These prolonged diagnostic journeys, often marked by mismanagement, can exacerbate the progression and severity of their conditions. While legislative efforts—such as the Orphan Drug Act—have spurred some advancements in rare disease research, over 95% of the 7,000 identified rare diseases still lack an FDA-approved cure. This significant gap is primarily due to insufficient funding and a lack of coordinated scientific initiatives.
Our hackathon participants will have the opportunity to tackle one of three aspects of the patient journey, focusing on areas such as genomic diagnostics, symptom management, or therapeutic targets, while drawing inspiration and insights from the work of our partnering patient organizations. We are excited to foster a community of collaboration and innovation, uniting diverse perspectives to tackle challenges in diagnosis, treatment, and awareness. Our goal is to make a meaningful impact in the field of rare diseases.
THE HACKATHON
In collaboration with the National Organization for Rare Disorders (NORD®), a team of Harvard undergraduate students is excited to host the 2025 Harvard Rare Disease Hackathon.
Held in honor of Rare Disease Day® (February 28), the Hackathon will take place over the weekend of March 1-2, 2025. Our goal is to bring together brilliant minds to explore computational solutions for rare diseases, leveraging the power of open science and genomic data.
Join us to deepen understanding and drive meaningful progress in improving the lives of those affected by rare diseases!
For those applying to be a NORD Scholar, the registration deadline is Wednesday, Feb. 12, 2025, at 11:59 p.m. EST. For all other participants, registration closes on Sunday, Feb. 23, 2025, at 11:59 p.m. EST.
