Rare Disease Education & Engagement Effort (RDe3)

About the Working Group

Though each rare disease affects only a small group of people, more than 10,000 known conditions collectively impact 10% of the world’s population, meaning that rare diseases are not so rare after all! Recognizing this, the RDe3 working group is dedicated to increasing awareness of rare disease among patients, providers, and the community.

Rare Disease Day

The kickoff of the RDe3 working group occurred on Rare Disease Day 2025!

Rare Disease Day is a global awareness initiative that is held every year on the last day of February (February 29th on leap years – the rarest day of the year!). It aims to raise awareness about rare diseases and their impact on patients’ lives, as well as an opportunity to advocate for improved access to rare diseases diagnoses, treatments, and support.

In recognition of Rare Disease Day 2025 and 2026, the RDe3 working group has organized two key events:

1. A full-day tabling event at UNC Hospitals focused on increasing visibility of rare diseases in health care

2. A rare disease symposium “Beyond the Horizon: Charting the Next Era of Rare Disease Progress at UNC”

Speakers will address:

• Progress of the UNC Rare Disease Initiative working groups
• Advances in rare disease treatment
• Patient – caregiver panel discussion

Other RDe3 Events include:

Primary Care: The Unsung Heroes in Rare Disease Diagnostics

A virtual, interactive event series focused on the diagnostic odyssey and how genetic testing can be implemented to help clinicians better support patient care.